Paid for by a grant from the United States Department of Health and Human Services, Health Resources Services Administration Maternal and Child Health Division (5H26MC00071) and by the New York State Department of Health NEW YORK STATE DEPARTMENT OF HEALTH WADSWORTH CENTER Empire State Plaza P.O. Box 509 Albany, NY 12201-0509 NameTitle/SectionTelephone Lawrence S. Sturman,Director, Wadsworth Center (518) 474-7592 MD, PhD Marlene Belfort, PhDDirector, Division of (518) 473-3345 Genetic Disorders Lorraine ClarkeDirector, Division(518) 485-5357 of Laboratory Quality Certification Katharine B. Harris, Genetic Services Administrator(518) 474-7148 MBAGENES Coordinator Nanette P. HealySupervisor, Cytogenetics(518) 474-6796 Laboratory Gerald J. Mizejewski, PhDDirector, Oncofetal(518) 486-5900 Antigen Laboratory Ann M. Willey, Director, Policy and Planning(518) 473-4856 PhD, JDDirector, Cytogenetics Laboratory NEW YORK STATE NEWBORN SCREENING PROGRAM Kenneth A. Pass, PhDDeputy Director, Division of (518) 474-1993 Genetic Disorders Chief, Laboratory of Genetics Services Director, Newborn Screening Program Ronald Bellisario, PhDResearch and Development(518) 486-5789 Lewis SchedlbauerDirector of Operations(518) 474-3043 Section Supervisors Meg ToombsData Entry Unit(518) 486-2584 John PostulkaHypothyroid Laboratory(518) 474-6489 Deborah RodriguezFollow-up Unit(518) 473-8472 John BerningerIMD Laboratory(518) 473-0784 DIVISION OF CHRONIC DISEASE PREVENTION AND ADULT HEALTH Karen Greendale, Director, Genetics Education (518) 474-1222 MA, CGCand Information Program NEW YORK STATE GENETICS SERVICES PROGRAMS The New York State Department of Health, Laboratory of Genetic Services administers a statewide clinical genetics program currently comprised of 24 Genetics Units which provide comprehensive genetics disease services on a regional or targeted area basis. All funded programs must be responsive to the objectives of the New York State Genetics Program which are: 1.To ensure the availability of comprehensive genetics services throughout New York State. 2.To ensure access to such services in areas that are identified to be underserved or unserved, by expanding existing genetics programs, improving referral systems or opening new satellite sites. 3.To ensure that genetics services in each catchment area are comprehensive and include diagnostic, therapeutic, and preventive services. 4.To ensure the financial accessibility of genetics services to all populations by eliminating financial barriers regardless of economic level. 5.To educate all third party payers about genetics services, and to encourage payers to include genetics services as part of their coverage. 6.To produce greater self-sufficiency of genetics programs by educating program billers on how to maximize all third party reimbursement and, in the absence of coverage, to utilize a zero-based sliding fee schedule. 7.To ensure that all appropriate practitioners, payers and the public are informed about genetic diseases, genetics services, and related issues through a coordinated educational campaign. 8.To ensure that local and statewide networks are linked to the appropriate national programs. 9.To ensure the continued development and application of techniques in genetic screening, diagnosis and counseling. Funded genetics providers have demonstrated the ability to provide non-categorical comprehensive genetics services including diagnosis (syndrome identification), counseling, follow-up and educational services to populations at risk in specific catchment areas. Educational programs are provided to professional and lay populations to increase the appropriate use of available genetics services. In HSAs or New York City boroughs where there are multiple genetics service providers, special effort is made to avoid duplication of services. Providers are expected to continually identify underserved and unserved neighborhoods and populations and to create programs to reach those populations. Several providers in New York State have developed expertise in specific genetic conditions or groups of conditions. Comprehensive service providers are expected to be aware of these programs and to work with them when possible. Genetic counselors in our centers routinely refer patients and families to appropriate voluntary support groups such as those listed in Section U. All providers are required to establish linkages with Maternal and Child Health and Crippled Children's Services programs supported under Title V of the Social Security Act, with regional offices of the State and Local Departments of Health and with local county agencies. Documentation of such interfaces must be demonstrated in progress reports and funding applications. Similar confirmatory communications are required to reflect on-going relationships with existing Sickle Cell Centers, Hemophilia Treatment Centers and other institutional genetics services programs (both external and internal) which may not be funded through the Maternal and Child Health Block Grant and/or state appropriation. All providers must send programmatic and financial information to the Department of Health as requested. Data must be collected on each patient seen on an individual Patient Contact Form (PCF). Department of Health staff may conduct site visits throughout the project grant period. Program directors must provide quarterly and annual reports of progress. A periodic competitive grant process ensures that the programs funded by the NYSDOH conform to the objectives of the program and that new providers are given the opportunity to compete for available funds. CHILDREN'S HOSPITAL OF BUFFALO HSA: 1 Address: Children's Hospital of Buffalo Division of Genetics 219 Bryant Street Buffalo, NY 14222 Telephone: (716) 878-7530 FAX: (716) 878-1351 Staff: Chief, Division of Genetics; Director, Metabolism Program; Director, Cytogenetics Laboratory; Director, DNA Diagnostic Laboratory: Richard W. Erbe, MD Director, Dysmorphology/Clinical Genetics: Luther K. Robinson, MD Associate Director, Clinical Genetics Program Laurie S. Sadler, MD Genetic Counselors: Sally R. Janes, MSW Juliann Stevens-Harvey, MS Kathleen R. Verdaasdonk, MS Developmental Pediatrics Consultants: Melissa Azuala, MD Thomas Lock, MD Mary Reese, MD Brian Rogers, MD Kevin Senn, MD Metabolism Program Nutritionist: Ellen W. DeVincentis, MS, RD Specialty Clinics: Adult Sickle Cell Clinic Craniofacial Disorders Clinic Cystic Fibrosis Clinic Developmental Disabilities Clinic Fetal Alcohol Syndrome Clinic Hematology Clinic Hemophilia Clinic Neuromuscular Disease Clinic Pediatric Sickle Cell Clinic Robert Warner Rehabilitation Center Williams Syndrome Clinic Satellite Clinics: Cattaraugus County Health Department Olean, NY 14760 Chautauqua County Health Department Mayville, NY 14757 Jesse Nash Health Center Buffalo, NY 14206 Niagara Family Pediatrics Niagara Falls, NY 14301 West Side Health Center Buffalo, NY 14201 Research Interests: Dysmorphology Fetal alcohol syndrome Fragile X syndrome Inherited metabolic disorders Metabolism of folic acid and homocysteine Mitochondrial disorders Molecular genetic testing Neuromuscular disease Teratogen exposure Special Hours: By appointment Flexible, on-call by pager Special Languages: Hospital interpreters available Special Resources: Adult Sickle Cell Patients Support Group DNA linkage analysis counseling and referral Lysosomal storage disease laboratory Metabolic disorders follow-up Neuromuscular disease/biochemical laboratory Parents group for sickle cell disease Regional Tay-Sachs screening program Teaching library for patients and professionals Teratogen hotline Western New York Genetics Consortium Advisory Group Western New York PKU Parent's Group UNIVERSITY OF ROCHESTER SCHOOL OF MEDICINE HSA: 2 Address: University of Rochester School of Medicine Rochester Regional Genetics Program Department of Pediatrics 601 Elmwood Avenue Rochester, NY 14642 Division of Pediatric Genetics, Box 777 Telephone: (716) 275-5857 FAX: (716) 273-1018 Staff: Director: George B. Segel, MD Geneticist/Molecular Biologist: Chin-To Fong, MD Geneticist, Director, Inherited Metabolic Disease Clinic: Georgianne Arnold, MD Clinical Coordinator: Jane DeLuca, RN, MSN, PNP Clinical Nutrition Specialist: Eileen Blakely, RD Reproductive Genetics, Box 668 Telephone: (716) 275-3304 Fax: (716) 256-4469 Staff: Director, Geneticist, Perinatologist: Devereux N. Saller, Jr., MD Clinical Coordinator, Genetic Counselor: Jeanne Peterson, MS Genetic Counselors: Andrea DeVizo, MS Pamela Plumeau, RN, PNP Kathleen Rossello, MS Division of Genetics and Screening Programs for Cancer, Hemoglobinopathies and Huntington's Disease, Box 641 Telephone: (716) 275-4602 (716) 275-3461 FAX: (716) 275-1034 Staff: Director: Peter Rowley, MD Project Coordinator: Starlene Loader Counselor: Sandra LaBella Biochemical Genetics Laboratory, Box 608 (Clinical Labs) Telephone: (716) 275-8483 Fax: (716) 273-1101 Staff: Laboratory Director: Robert A. Mooney, PhD Specialty Clinics: Birth Defects Center Cardiology Clinic Developmental Clinic Hemophilia Center of Rochester Huntington's Disease Clinic Muscular Dystrophy Unit Neurofibromatosis Clinic Treatment Center for Inherited Metabolic Disorders University Affiliated Program for Developmental Disabilities University of Rochester Cystic Fibrosis Clinic University of Rochester Neuromuscular Unit Satellite Clinics: Special Children's Center Ithaca, NY 14850 Research Interests: Cellular function and transport Cytogenetics of neoplastic cells Evaluation of genetic screening and counseling Inherited susceptibility to cancer Neurofibromatosis Nutritional and developmental parameters in inborn errors of metabolism von Hippel-Lindau disease Special Hours: Flexible in the event of an abnormal prenatal diagnosis Special Languages: Hospital interpreters: American Sign Language Southeast Asian Languages Spanish Others through AT&T Language Line Special Resources: Cancer cytogenetics Dysmorphology Fetal echocardiography Follow-up care of metabolic disorders Hemoglobinopathy screening Maternal serum AFP+ program Specialized cytogenetics - i.e. sister chromatid exchange, prometaphase, FISH, chromosome dissection Teratogen information STATE UNIVERSITY OF NEW YORK - UPSTATE MEDICAL CENTER HSA: 3 Address: SUNY Upstate Medical Center Regional Genetics Program Room 4139 750 East Adams Street Syracuse, NY 13210 Telephone: (315) 464-5884 (Project Office) (315) 464-4458 (Perinatal Center) (315) 464-7610 (Pediatric and Adult Genetics) FAX: (315) 464-6557 (Project Office) E-mail: silversb@upstate.edu Staff: Director, Perinatal Center: Robert Silverman, MD Director, Pediatric Genetics: Joe J. Hoo, MD Project Coordinator: Barbara Silverstone Perinatal Genetic Counselors: Karen Fay, MS Mary Jo Maestri, MS Tanya McGuire, MS Pediatric Genetic Counselors: Bonnie Braddock, MS Laura Thomson, MS Specialty Clinics: Cystic Fibrosis Clinic Muscular Dystrophy Clinic Neurofibromatosis Clinic Regional Perinatal Center Sickle Cell Treatment Center Spina Bifida Clinic Satellite Clinics: Handicapped Children's Center Binghamton, NY 13901 House of the Good Samaritan Watertown, NY 13601 North Country Children's Clinic Watertown, NY 13601 OB/GYN Associates of Northern New York Watertown, NY 13601 Research Interests: Chorionic villus sampling and placental biopsy Clinical cytogenetics Special Hours: Special Languages: Hospital interpreters as needed Special Resources: Chorionic villus sampling Cordocentesis Cytogenetics Dysmorphology Fetal echocardiography Fluorescent in situ hybridization HLA typing (Department of Clinical Pathology) Inborn errors of metabolism Maternal serum alpha-fetoprotein program Molecular diagnosis Regional Tay-Sachs screening program Sickle cell treatment program Teratogen counseling BINGHAMTON GENETIC COUNSELING PROGRAM HSA: 4 Address: Binghamton Genetic Counseling Program 124 Front Street Binghamton, NY 13905 Telephone: (607) 724-4308 FAX: (607) 724-8290 Staff: Project Director/Genetic Counselor: Luba Djurdjinovic, MS Medical Director, Consultant: Murray L. Nussbaum, MD Genetic Counselor Gwen Lopez, MS, CGC Social Worker: Tina Pilgrim, RN, MA, CSW North Country Genetic Service Project Providing Services to the Northern New York/Adirondack Region Staff: Consultant: Nietta Rogers, RN Coordinator, Genetic Counselor: Tammy Snell, MS Affiliation: Joe Jie Hoo, MD SUNY - Upstate Medical University Department of Pediatrics 750 East Adams Street Syracuse, NY 13210 Specialty Clinics: Craniofacial Evaluation Clinic Hemophilia Clinic Pediatric Clinic Satellite Clinics: Utica Office 3946 Oneida Street New Hartford, NY 13413 (315) 724-4348 Research Interests: Community genetics Infertility Special Hours: Evening appointments available Occasional Saturdays Special Languages: Special Resources: Families of Color Initiative Infertility support group ALBANY MEDICAL CENTER HSA: 5 Address: Albany Medical Center Clinical Genetics Department of Pediatrics - A88 47 New Scotland Avenue Albany, NY 12208 Telephone: (518) 262-5120 FAX: (518) 262-5924 Staff: Director, Clinical Genetics: Ian H. Porter, MD Co-Directors, Pediatric Endocrinology and Metabolism: Linda Riddick, MD Irene Sills, MD Genetic Counselors: Michelle R. Goyer, MS Christine R. Moore, MS Clinical Nurse Specialist, Pediatric Endocrinology and Metabolism: Cheryl Clow, RN Perinatal Ob/Gyn: Scott Dexter, MD Daniel Edelstone, MD Rene Samuelson, MD Specialty Clinics: Craniofacial Clinic (St. Peter's Hospital) Gaucher's Disease Clinic Hemophilia Clinic Huntington Disease Program Inherited Metabolic Disease Treatment Center Muscular Dystrophy Clinic Myelomeningocele Clinic Neurofibromatosis Clinic Phenylketonuria Clinic Sickle Cell Clinic Satellite Clinics: Planned Parenthood of Oneonta Oneonta, NY 13820 Research Interests: Growth in various genetic syndromes Maternal PKU Mechanisms of fetal alpha-fetoprotein regulation and their relationship to genetic disorders Molecular investigation of cytogenetic abnormalities Special Hours: Flexible Special Languages: Hospital staff members are available for interpretation into various languages including American Sign Language Special Resources: Family support groups Fetal echocardiography Support group for women who have terminated pregnancies for genetic/medical reasons REGIONAL MEDICAL GENETICS CENTER, INC. HSA: 6 Address: Regional Medical Genetics Center, Inc. 19 Bradhurst Avenue Hawthorne, NY 10532 Telephone: (914) 347-3010 FAX: (914) 347-4218 E-mail: lrskicker@msn.com Staff: Director, Clinical Genetics and Clinical Cytogeneticist: Lawrence R. Shapiro, MD Medical Geneticist: David F. Kronn, MD Supervising Genetic Counselor and Administrative Assistant: Linda Higgs, MS Genetic Counselors: Jacqueline Hoover, MS Robin Scott, MS Heidi Taska, MS Specialty Clinics: Hereditary Cancer Institute Craniofacial Center Cystic Fibrosis Clinic Gaucher Disease Center High Risk Obstetrics/Gynecology Clinic Hypothyroidism Center Mental Retardation Institute Metabolic Disease Center and Clinic Neonatal Intensive Care Unit Sickle Cell/Pediatric Hematology Clinic Spina Bifida Clinic Teratogen Hotline Outreach Sites: Community General Hospital Harris, NY (Sullivan County) Horton Memorial Hospital Middletown, NY (Orange County) Kingston Hospital Kingston, NY (Ulster County) Nyack Hospital Nyack, NY (Rockland County) Putnam Community Hospital Carmel, NY (Putnam County) Rockland County Health Center Pomona, NY (Rockland County) South Shore Hospital New Rochelle, NY 10802 (Westchester County) Vassar Brothers Hospital Poughkeepsie, NY (Dutchess County) Research Interests: Cytogenetics and dysmorphology Fragile X including prenatal diagnosis Prenatal diagnosis Special Hours: By prior arrangement Special Languages: Special Resources: Biochemical and metabolic genetics Regional Tay-Sachs carrier detection program Teratogen information and counseling LINCOLN MEDICAL & MENTAL HEALTH CENTER HSA/Borough: 7/Bronx Address: Lincoln Medical and Mental Health Center 234 East 149th Street Bronx, NY 10451 Telephone: (718) 579-5295 Fax: (718) 579-4640 Staff: Director, Medical Genetics: Philip Giampietro, PhD, MD Developmentalist: Alyson Gutman, MD Genetic Counselors: Kara Gardner, MS Hody Tannenbaum, MS, CGC Pediatric Hematologist: Thomas Moulton, MD Pediatric Endocrinologist: Swati Dave-Sharma, MD Specialty Clinics: Birth Defects Clinic High Risk Obstetrics Clinic Pediatric Hematology/Sickle Cell Clinic Satellite Clinics: Morrisania D&TC Segundo Ruiz Belvis D&TC Research Interests: Dysmorphology Fanconi anemia Marfan syndrome Special Hours: Special Languages: American Sign Language French Lao Spanish Thai Others through hospital interpreters Special Resources: Fetal echocardiography MSAFP program Newborn screening follow-up Prenatal hemoglobinopathy screening Sickle cell disease support groups for teens and parents Teratogen counseling MONTEFIORE MEDICAL CENTER HSA/Borough: 7/Bronx Division of Reproductive Genetics Address: Montefiore Medical Center Division of Reproductive Genetics Department of OB/GYN 1695 Eastchester Road Bronx, NY 10461 Telephone: (718) 405-8150 FAX: (718) 405-8154 Division of Pediatric Genetics Address: Montefiore Center for Congenital Disorders Center for Craniofacial Disorders 111 East 210th Street Bronx, NY 10467 Telephone: (718) 920-4300 FAX: (718) 920-6506 Staff: Co-Directors: Susan Gross, MD Robert W. Marion, MD Harold M. Nitowsky, MD Medical Geneticists: Paul A. Levy, MD Alan Shanske, MD Genetic Counselors: Myrna Ben-Yishay, MS Suzanne M. Carter, MS Judy Finn-Powers, MS Ellen Hantman, MS Specialty Clinics: Bone Dysplasia Clinic Chromosomal Clinic (includes Down Syndrome) Craniofacial Center General Dysmorphology Clinic Genetic Counseling for Cancer Neurofibromatosis Clinic Prenatal Diagnostic Center Spina Bifida Clinic Satellite Clinics: Blythedale Children's Hospital Bronx-Lebanon Hospital Bronx Municipal Hospital Center Jacobi Hospital North Central Bronx Hospital Research Interests: 22-q 11 deletion syndrome Biological and clinical implications of chromosome inversions In situ hybridization for analysis of chromosome abnormalities Molecular genetic abnormalities in sphingolipid storage disorders Natural history of multiple malformation syndromes Prenatal detailed ultrasound Serum markers in screening for fetal aneuploidy Uniparental disomy as a cause of prenatal and postnatal growth retardation Special Hours: Special Languages: Spanish Special Resources: Biochemical Genetics Carrier detection of coagulopathies Comprehensive Sickle Cell Center Disorder diagnosis Fellowship program Hematology/hemostasis laboratory for hemophilia HLA typing laboratory Molecular genetics Perinatal Assessment Center, Department of OB/GYN Reproductive genetics laboratory - Cytogenetics and biochemical THE BROOKLYN HOSPITAL CENTER HSA/Borough: 7/Brooklyn Address: The Brooklyn Hospital Center Departments of Obstetrics/Gynecology and Pediatrics Reproductive Genetics 121 Dekalb Avenue Brooklyn, NY 11201 Telephone: (718) 250-8032 Fax: (718) 250-8660 Staff: Director, Reproductive Genetics: Michael F. Cabbad, MD Clinical Geneticists: Fred Gilbert, MD Genetic Counselors: Marilyn Erickson, MS Kara Smith, MS Hematology/Oncology/Newborn Screening: Lynda Carde, RN Specialty Clinics: Bloodless Medicine and Surgery Program Cancer Center/Bone Marrow Transplant Unit Fertility Institute High Risk Obstetrics/Gynecology Clinic Level III Neonatal Intensive Care Unit Pediatric Hematology Clinic Speech and Hearing Center Satellite Clinics: All City Family Health Center Betty Shabbaz Community Family Planning Center Caribbean House Community Action of Bedford-Stuyvesant/Community Family Planning Center Fort Greene Maternal/Infant Care Center La Providencia Manhattan Avenue Clinic St. Francis de Sales School for the Deaf South Brooklyn Clinic Williamsburg Family Health Center Williamsburg Maternal/Infant Care Center Family Planning Project Research Interests: Breast cancer genetics Dysmorphology Epilepsy Hearing loss Infertility and reproductive loss Teen pregnancy Special Hours: Special Languages: Creole French Russian Spanish Special Resources: Chorionic villi sampling Level II fetal sonography and echocardiography Percutaneous umbilical blood sampling Level II fetal sonography and echocardiography MAIMONIDES MEDICAL CENTER HSA/Borough: 7/Brooklyn Address: Maimonides Medical Center 4802 10th Avenue Brooklyn, NY 11219 Telephone: (718) 283-7229 FAX: (718) 635-7442 Staff: Chief Clinical Geneticist: Gabriel S. Kupchik, MD Division Coordinator, Genetic Counselor: Shannon Barrett, MS Genetic Counselor: Deborah Rosa, MS Specialty Clinics: Satellite Clinics: Brookdale Hospital Medical Center Lutheran Medical Center MMC Developmental Center Research Interests: Bipolar disorders Cystic fibrosis Genetic counseling in the Pakistani community Special Hours: 24 hour beeper coverage Special Languages: Hebrew Russian Spanish Urdu Hospital interpreters for 60 other languages Special Resources: CVS Fragile X testing MSAFP program NEW YORK METHODIST HOSPITAL HSA/Borough: 7/Brooklyn Address: New York Methodist Hospital 506 Sixth Street Brooklyn, NY 11215 Telephone: (718) 780-3264 - Clinical Genetics (718) 636-0971 - Genetic Counseling (718) 857-5643 - Sickle Cell/Thalassemia Program FAX: (718) 780-3085 - Genetic Counseling (718) 857-6798 - Sickle Cell/Thalassemia Program Staff: Director, Medicine: Harvey Dosik, MD Clinical Geneticist: Ernest Lieber, MD Chief, Comprehensive Sickle Cell/Thalassemia Program; Director, Newborn Screening: Rita Bellevue, MD Genetic Counselor: Sharon Wolfe, MS Newborn Screening Coordinator for Hemoglobinopathies: Patricia Ryans Specialty Clinics: Ashkenazi Jewish Genetics Disease Screening Program Breast Cancer Risk Assessment Comprehensive follow-up clinic for patients with abnormal hemoglobins Newborn Screening Follow-up Clinic Prenatal/Preconception Clinics Sickle Cell/Thalassemia Program Satellite Clinics: Research Interests: Breast Cancer Hematological disorders: sickle cell disease, thalassemias Special Hours: Evening hours or weekend hours are available when arranged in advance Special Languages: Creole French Spanish Special Resources: Neurofibromatosis support group Sickle cell/thalassemia patient education group Sickle cell/thalassemia patient support group Sickle cell/thalassemia fund raising network School education in general genetics and hemoglobinopathies BETH ISRAEL MEDICAL CENTER HSA/Borough: 7/Manhattan Address: Beth Israel Medical Center Division of Medical Genetics First Avenue at 16th Street New York, NY 10003 Telephone: (212) 420-4179 FAX: (212) 420-3440 E-mail: vpenchas@bethisrealny.org Staff: Chief, Division of Medical Genetics: Victor Penchaszadeh, MD, MS Genetic Counselors: Katherine Daley, MS Andrea Fuchs, MS Jennifer Gerschowitz, MS Diana Punales-Morejon, MS Specialty Clinics: Birth Defects Clinic High Risk Pregnancy Clinic Pediatric Genetics Clinic Satellite Clinics: Research Interests: Cytogenetic markers Dysmorphology Epidemiology of birth defects Genetics and public health Psychosocial aspects of genetic counseling Transcultural aspects of genetic counseling in Hispanic and Asian populations Special Hours: Flexible Special Languages: French Greek Hebrew Indian Italian Rumanian Russian Spanish Special Resources: Cancer genetics Hemoglobinopathy screening Maternal Screening Perinatology Support group for patients who have terminated pregnancies for genetic reasons Teratogen information HARLEM HOSPITAL CENTER HSA/Borough: 7/Manhattan Address: Harlem Hospital 135th Street at Lenox Avenue, Suite 6146 New York, NY 10037 Telephone: (212) 939-1701 FAX: (212) 281-4334 Staff: Director: Jeanne A. Smith, MD Consultant/Geneticist: Nelly Jouayed, MD Genetic Counselors: Cecelia Campbell, MS Theresa Dugger, MS Social Worker: Howard Forbes Health Educator: Eleanor W. Peterson, RN, MA Specialty Clinics: Amniocentesis Counseling High Risk Obstetrics Clinic Pediatric Genetic Clinic Prenatal Diagnosis/Counseling Sickle Cell Clinic Satellite Clinics: Research Interests: Sickle cell and related hemoglobinopathies Special hours: Special Languages: Hospital interpreters available Special Resources: Health education Sickle cell support groups METROPOLITAN HOSPITAL CENTER HSA/Borough: 7/Manhattan Address: Metropolitan Hospital Center Department of Pediatrics Division of Genetics 1901 First Avenue New York, NY 10029 Telephone: (212) 423-6452 FAX: (212) 423-6183/8450 Staff: Director, Clinical Genetics: Karen L. David, MD Coordinator, Genetic Counseling Services: Meg Menzel, MS Specialty Clinics: Cleft Palate Clinic Developmental Clinic Infant Stimulation Program Pediatric Hematology/Sickle Cell Clinic Satellite Clinics: Terence Cardinal Cooke Health Care Center Research Interests: Dysmorphology Teratology Special Hours: By request Special Languages: American Sign Language French Spanish Others through hospital interpreters Special Resources: Down syndrome support group MSAFP program Sickle cell disease counseling/screening program MOUNT SINAI MEDICAL CENTER HSA/Borough: 7/Manhattan Address: Mount Sinai Medical Center Department of Human Genetics One Gustave L. Levy Place Box 1497 New York, NY 10029 Telephone: (212) 241-6947 FAX: (212) 860-3316 E-mail: J.Willner@mssm.edu Web page: www.mssm.edu/genetics/homepage.html Staff: Chairman, Department of Human Genetics; Director, Center for Jewish Genetic Diseases: Robert J. Desnick, PhD, MD Vice Chair, Department of Human Genetics: Margaret McGovern, MD, PhD Clinical Geneticists: George Diaz, MD Christine M. Eng, MD Bruce Gelb, MD Kurt Hirschhorn, MD Nataline Kardon, MD John Martignetti, MD, PhD Gregory Pastores, MD Claude Sansaricq, MD, PhD Selma E. Snyderman, MD Melissa Wasserstein, MD Judith P. Willner, MD Biochemical Geneticists: Marie Grace, PhD Kimiyo Raymond, MD Cytogeneticists: Teresa Dunn, PhD Nataline Kardon, MD Molecular Geneticist: Ruth Kornreich, PhD Center for Jewish Genetic Diseases: Robert J. Desnick, PhD, MD Pramod Mistry, MD, PhD Genetic Counselors: Shivani Batra, MS Alison Smith, MS Yara Kharbutli, MS Julie McGlynn, MS Jane Robinowitz, MS Karyn Schmeider, MS Lorien Tambini, MS Randi Zinberg, MS Cancer Genetics Counseling Program Coordinator: Karen Brown, MS Sherry Campbell-Grumett, MS Niecee Singer, MS Specialty Clinics: Comprehensive Gaucher Disease Clinic Cancer Genetic Counseling Program Cardiogenetics Clinic Cranio-Facial Disorders Clinic Cystic Fibrosis Clinic Fabry Disease Clinic Hemoglobinopathy Clinic Hemophilia Clinic (in collaboration with New York Hospital-Cornell Medical Center) Inherited Metabolic Disease Clinic Neurofibromatosis Clinic Neuromuscular Clinic Neurogenetics Clinic Obstetrics Genetic Counseling Clinic Pediatric Neuromuscular Clinic Satellite Clinics: Research Interests: Chromosome instability in human cancers Clinical delineation of genetic disorders in unique and unusual syndromes Cystic fibrosis prenatal diagnosis Fabry disease - molecular and model therapeutic studies First trimester maternal marker/ultrasound screening (FASTER Study) Gaucher disease - studies of genetic heterogeneity, natural history, molecular studies, therapeutic approaches Genetics of congenital heart disease Inherited metabolic diseases: diagnosis and treatment Molecular-based genetic screening Mucopolysaccharidoses - natural history, animal models and therapeutic approaches Natural history of incontinentia pigmenti Niemann Pick disease - natural history and diagnostic approaches Phenylketonuria - genotype/phenotype correlations and therapeutic treatment Porphyrias - studies of human heme biosynthesis Tay-Sachs disease and GM2 gangliosidosis - biochemical, molecular and clinical studies Special Hours: Evening Jewish genetic disease screening Weekly evening amniocentesis group counseling Special Languages: Spanish Special Resources: Center for Jewish Genetic Diseases Chorionic villus sampling and amniocentesis DNA diagnostic laboratory FASTER study Fetal echocardiography Fetoscopy Gaucher's disease patient support group Genetic Counselor Masters Degree Program Jewish genetic disease carrier screening Lysosomal enzyme laboratory Maternal marker screening Percutaneous fetal blood sampling Program for inherited metabolic disease Sickle cell disease program Tay-Sachs disease carrier screening program NEW YORK UNIVERSITY MEDICAL CENTER HSA/Borough: 7/Manhattan Address: New York University Medical Center Department of Pediatrics Human Genetics Program 550 First Avenue New York, NY 10016 Telephone: (212) 263-5746 FAX: (212) 263-7590 E-mail: ostreh01@mcrer6.med.nyu.edu Web site: www.med.nyu.edu/genetics Staff: Director and Medical Geneticist; Director Molecular Genetics Laboratory: Harry Ostrer, MD Medical Geneticists: Lillian Y.F. Hsu, MD Gregory Pastores, MD Robert Wallerstein, MD Chief, Neurology, Biochemical Geneticist, Clinical Geneticist: Edwin H. Kolodny, MD Genetic Counselors: Jill Borsuk, MS Valerie Jansen, MS Janice Ng, MS Elsa Reich, MS Laura Zajac, MS Genetic Counselor - Hospital for Joint Diseases Ellen Moran, MS Biochemical Geneticist: Rochelle Hirschhorn, MD Supervisor, Molecular Genetics Laboratory: Carole Oddoux, PhD Specialty Clinics: Birth Defects Clinic Cancer Risk Clinic Cleft Lip/Palate Clinic Craniofacial Clinic Dysautonomia Treatment and Evaluation Center Ectodermal Dysplasia Clinic Endocrine/Sexual Differentiation Clinic Fertility Clinic Gaucher Treatment Program Hearing Loss Clinic Hemophilia Clinic High Risk Pregnancy Clinic Neuromuscular Diseases Clinic Spina Bifida Clinic Satellite Clinics: Bellevue Hospital Hospital for Joint Diseases, Center for Neuromuscular and Developmental Disorders New York Downtown Hospital Rusk Institute of Rehabilitation Medicine Tisch Hospital Research Interests: Adenosine deaminase Autonomic neuropathies Clotting disorders Control of pigmentation Disorders of sexual differentiation Hearing and Deafness Hereditary sensory neuropathies Human color vision Immunodeficiencies Lysosomal and other neurodegenerative diseases Rubenstein-Taybi syndrome Storage disorders (Pompé disease, Gaucher disease and Sphingolipidoses) Tumor cytogenetics Special Hours: Special Languages: Cantonese French Mandarin Spanish Special Resources: Autonomic function laboratory Fetal echocardiography Hypothyroidism center Metabolic disease center Molecular genetics laboratory MSAFP program Screening for Ashkenazi Jewish diseases and autosomal recessive disorders in other population groups NEW YORK PRESBYTERIAN HOSPITAL HSA/Borough: 7/Manhattan Address: New York Presbyterian Hospital 117 Fort Washington Avenue Milstein Building 9GN-421 New York, NY 10032 Telephone: (212) 305-6731 Fax: (212) 305-9058 Staff: Director, Division of Clinical Genetics: Kwame Anyane-Yeboa, MD Co-director, Division of Clinical Genetics; Director, Molecular Genetics Laboratory: Stephen A. Brown, MD (212) 305-6742 Clinical Geneticist: Wendy Chung, MD, PhD Robert Vosatka, MD Division Coordinator: Carrie Koval, MS Genetic Counselors: Erin Caine, MS Elana Cox, MS Ruth Ann Denchy, MS Edwin Guzman, MS Jennifer Kaufman, MS Donna Russo, MS Karlla Welch, MS Jennifer Williamson, MS Specialty Clinics: Cancer Genetics Clinic Craniofacial Clinic Cystic Fibrosis Clinic Huntington Disease Clinic Movement Disorders Clinic Muscular Dystrophy Clinic Sickle Cell Clinic Satellite Programs: Research Interests: DCA/MELAS clinical trial First and Second Trimester Elavuation of Risk (FASTER Trial) Familial Alzheimers disease and early onset Alzheimers disease Gene therapy Investigation of clinical syndromes associated with mtDNA point mutations Mitochondrial disorders Molecular basis of inherited skin disorders Molecular genetics analysis of obesity and type 2 diabetes mellitus ZIC 2 Mutations and holoprosencephaly Special Hours: Special Language: Spanish Special Resources: Chorionic villus sampling DNA analysis: Fragile X, Prader-Willi, Duchenne muscular dystrophy, uniparental disomy studies, sickle cell FISH analysis MtDNA mutation analysis Paternity testing Prenatal diagnosis for Huntington's disease Prenatal diagnosis for sickle cell disease SOD 1 testing Tumor cytogenetics X chromosome inactivation skewing (especially related to premature ovarian failure) Y chromosome microdeletion studies related to male infertility ST. LUKE'S-ROOSEVELT HOSPITAL CENTER HSA/Borough: 7/Manhattan Address: St. Luke's-Roosevelt Hospital Center Genetics Division - 1000 Tenth Avenue, 11th Floor, Room 11A New York, NY 10019 Telephone: (212) 523-5895 Fax: (212) 523-3864 Staff: Clinical Geneticist: Kwame Anyane-Yeboa, MD Genetic Counselors: Elaine Fuhrman, MS Heather Shane, MS Lisa Stevens, MS Data Coordinator: Elaine Wilkes Social and Educational Services: Elise Rackmill, CSW Social Services: Sandra Hernandez, CSW Specialty Clinics: Pediatric Genetics Clinic Satellite Clinics: Research Interests: Clinical dysmorphology Special hours: Call for information Special Languages: Hospital interpreters available Special Resources: Affiliated with Columbia University Sickle Cell Center A designated New York State Blood Dyscrasia Center SAINT VINCENT CATHOLIC MEDICAL CENTERS OF NEW YORK HSA/Borough: 7/Manhattan Address: Saint Vincent Catholic Medical Centers of New York, Manhattan Region O'Toole Building, Suite 509 36 Seventh Avenue New York, NY 10011 Telephone: (212) 604-8896 Fax: (212) 604-3899 Staff: Clinical Geneticist: Gordon Hutcheon, MD Genetic Counselor: Elinor Langfelder Schwind, MS Mary Miller, MS Specialty Clinics: Cystic Fibrosis Clinic Satellite Clinics: Research Interests: Cystic Fibrosis Dysmorphology Special Hours: Special Languages: Hospital interpreters are available Special Resources: CITY HOSPITAL CENTER AT ELMHURST HSA/Borough: 7/Queens Address: City Hospital Center at Elmhurst Department of Pediatrics E9-1 79-01 Broadway Elmhurst, NY 11373 Telephone: (718) 334-5510/5111 FAX: (718) 334-5759 Staff: Director, Pediatrics: Mel Gertner, M.D Clinical Geneticist: Sara Kaffe, MD Genetic Counselor: Carrie Koval, MS Specialty Clinics: Developmental Evaluation Clinic Obstetrics Genetic Counseling Clinic Pediatric Neuromuscular Clinic Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: NORTH SHORE LONG ISLAND JEWISH MEDICAL CENTER HSA/Borough: 7/Queens Address: North Shore Long Island Jewish Medical Center Schneider Children's Hospital 269-01 76th Avenue New Hyde Park, NY 11040 Telephone: New Hyde Park Site - (718) 470-3010 St. Albans Site - (718) 298-8536 Fax: New Hyde Park - (718) 347-2814 St. Albans Site - (718) 298-8537 Staff: Director and Clinical Geneticist: Joyce E. Fox, MD Project Coordinator: William Molette Genetic Counselors: Suzanna Allan, MS Jenna Antonelli, MS Donna Blumenthal, MS Meredith Masiello, MS Nina Sitron, MS Specialty Clinics: Craniofacial Clinic Cystic Fibrosis Clinic Gender Development Clinic (Bernard Worob Center) Hemophilia Clinic Marfan Syndrome Clinic Neurofibromatosis Center Satellite Clinics: The Jamaica Hospital The Maternal and Infant Care Project, Jamaica Veterans Administration Extended Care Center, St. Albans Research Interests: Special Hours: Special Languages: Spanish Special Resources: Support groups QUEENS HOSPITAL CENTER HSA/Borough: 7/Queens Address: Queens Hospital Center 82-68th 164th Street Jamaica, NY 11432 Telephone: (718) 883-4676 FAX: (718) 883-6107 Staff: Medical Geneticist/Developmentalist: Sara Kaffe, MD Genetic Counselor: Patricia Power, MS Specialty Clinics: Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: INSTITUTE FOR BASIC RESEARCH IN DEVELOPMENTAL DISABILITIES HSA/Borough: 7/Staten Island Address: Institute for Basic Research in Developmental Disabilities 1050 Forest Hill Road Staten Island, NY 10314 Telephone: (718) 494-5221 FAX: (718) 494-1072 Staff: Director, Inherited Metabolic Disorders Laboratory and Genetic Testing: Susan Sklower Brooks, MD Chairman, Department of Human Genetics; Director, DNA Diagnostic Laboratory; Director, George A. Jervis Clinic: W. Ted Brown, MD, PhD Chairman, Department of Cytogenetics; Director, Cytogenetics Laboratory: Edmund C. Jenkins, PhD Genetic Counselors: Jacquelyn Krogh, MS Nancy Zellers, MS Head, Laboratory of Molecular Genetics: Nan Zhong, MD Head, Laboratory of Mucopolysaccharide Research: Fred Kieras, PhD Supervisor, Biochemical Genetics Laboratory: Lorraine Wilbur Supervisor, DNA Diagnostic Laboratory: Sarah L. Nolia, PhD Specialty Clinics: Cleft Lip/Cleft Palate Clinic Developmental Disabilities Clinic Fragile X Clinic High Risk Pregnancy Clinic Sickle Cell and Newborn Screening Clinic Teen Pregnancy Clinic Satellite Clinics: St. Vincent Catholic Medical Center of New York, Staten Island Divison Staten Island University Hospital Research Interests: Batten disease Down syndrome Fragile X syndrome Neuronal ceroid lipofuscinosis Prader-Willi syndrome Storage disorders Special Hours: Special Languages: Chinese Hindi Italian Spanish Special Resources: Amino acid analysis Complex and simple carbohydrate analysis Dolichol analysis Fragile X DNA analysis Ganglioside analysis Glycolipid analysis High resolution cytogenetics In-situ hybridization Lysosomal enzyme analysis Organic acid analysis Very long chain fatty acid analysis NASSAU COUNTY MEDICAL CENTER HSA: 8 Address: Nassau County Medical Center 2201 Hempstead Turnpike East Meadow, NY 11554 Telephone: Division of Medical Genetics: Department of Ob/Gyn - (516) 572-6166 Department of Pediatrics - (516) 572-3148, 572-3391 Fax: (516) 572-5718 E-mail: bfeldman@NUMC.edu (Department of Pediatrics) RegionalGenetics@Compuserve.Com (Barbara Miller, MS) Staff: Clinical Geneticist: Jack Sherman, MD Genetic Counselors: Barbara Davidoff-Feldman, MS, CGC Vivien Diaz-Barrios, MS, CGC Barbara Miller, MS, CGC Genetic Assistant: Barbara Hull, MS Specialty Clinics: Child Development Center Muscular Dystrophy Clinic Pediatric Hematology Clinic Prenatal Diagnostic Center Sickle Cell Satellite Clinics: Central Suffolk Hospital, Riverhead, NY Martin Luther King Health Center, Wyandanch, NY Tri-Community Health Center, Amityville, NY Research Interests: Special Hours: Special Languages: Spanish Special Resources: STATE UNIVERSITY OF NEW YORK AT STONY BROOK HSA: 8 Address: SUNY at Stony Brook Genetics Division, Department of Pediatrics L5, Room 728 University Hospital Stony Brook, NY 11794-7535 Telephone: (631) 444-2790 FAX: (631) 444-2761 Staff: Pediatric Geneticist: Patricia A. Galvin-Parton, MD Genetic Counselors: Linda Buttice, MS Marcy Demsky, MS Gwen Goldstein, MS Jennifer Neil, MS Michelle Sardella, MS Jody Weiss-Burns, MS Nutritionist: Maria Puangco, RD Specialty Clinics: Cystic Fibrosis Center Cleft Palate/Craniofacial Team General Genetics Clinic Hemoglobinopathy Clinic Metabolic Clinic Neurofibromatosis/Tuberous Sclerosis Clinic NICU/In-patient genetic services Satellite Clinics: Lifecare Center Hampton Bays, NY St. Charles Hospital Port Jefferson, NY 11777 Suffolk County Health Centers (All) Research Interests: Aminoacidopathies Lysosomal storage diseases Special Hours: Evening and Saturday hours Special Languages: Spanish Other languages available through hospital interpreters Special Resources: Amniocentesis Fetal echocardiography Full service cytogenetics laboratory Jewish diseases screening program MSAFP program Molecular Diagnostics Laboratory Percutaneous umbilical blood sampling Perinatal bereavement team Perinatology service Teratogen Counseling WINTHROP UNIVERSITY HOSPITAL HSA: 8 Address: Winthrop University Hospital 120 Mineola Soulevard, Suite 210 Mineola, NY 11501 Telephone: (516) 663-2657 FAX: (516) 663-3070 Staff: Director, Genetics Division; Assistant Director, Pediatric Endocrinology: Moris Angulo, MD Clinical Genetic Consultant: Kwame Anyane-Yeboa, MD Director, Pediatric Endocrinology: Mariano Castro-Mangana, MD Genetic Counselors: Elizabeth Hegarty, MS Kathleen O'Brien, MS Elizabeth Segel, MS Specialty Clinics: Abnormalities of Sexual Differentiation CVS Program Growth Disorders Prader-Willi Clinic Satellite Clinics: New Island Hospital Bethpage, NY 11714 566 Merrick Road Rockville Centre, NY 11570 Research Interests: Growth disorders Prader-Willi syndrome Special Hours: Saturday Special Languages: Spanish Special Resources: CVS Support group for parents of children with Prader-Willi syndrome Full service cytogenetics laboratory Jewish diseases screening program MSAFP program Molecular Diagnostics Laboratory Percutaneous umbilical blood sampling Perinatal bereavement team Perinatology service Teratogen Counseling ADDITIONAL GENETICS SERVICE PROGRAMS IN GENES The Genetics Services Programs listed in this section do not presently receive funding from the New York State Department of Health, Laboratory of Human Genetics. This is not a judgement of their capability to provide quality genetics services. The list is not exhaustive and there may be programs which are not listed because they are not known by the New York State Genetics Services Program staff. PEGGY BLATTNER, MS HSA: 6 Address: Peggy Blattner, MS 4 Cherrywood Road Scarsdale, NY 10583 Telephone: (914) 725-3212 Affiliation: White Plains Hospital Staff: Consultant Genetic Counselor, Muscular Dystrophy Association: Peggy Blattner, MS Specialty Clinics: Muscle Disorders Clinic Prenatal Diagnosis Clinic Satellite Clinics: Research Interests: Muscular dystrophies Special Hours: Special Languages: French Italian Special Resources: Support group information and referral BLYTHEDALE CHILDREN'S HOSPITAL HSA: 6 Address: Blythedale Children's Hospital Valhalla, NY 10595-1597 Telephone: (914) 592-7555 FAX: (914) 592-5844 Staff: Physicians: Robert W. Marion, MD Genetic Counselors: Ellen Hantman, MS Specialty Clinics: Craniofacial Clinic Limb Deficiency Clinic Neurofibromatosis Clinic Spina Bifida Clinic Satellite Clinics: Affiliated with Center for Congenital Disorders, Montefiore Medical Center, Bronx, NY Research Interests: Natural history of syndromes Spina Bifida Treatment for osteogenesis inperfecta Special Hours: Special Languages: Spanish Special Resources: Multidisciplinary approach to longitudinal care including all necessary specialties and subspecialties. GENZYME GENETICS HSA: 6,7,8 Address: Genzyme Genetics 100 Corporate Drive Yonkers, NY 10701-6807 Telephone: Laboratory: (914) 969-3399 (800) 969-9933 (800) 955-4363 Clinical Services: (800) 969-3398 FAX: (914) 969-2019 Staff: Medical Directors: Stirling Puck, MD Sucheta Bhatt, MD Cytogeneticist: Barry Barnoski, PhD Meira Shaham, PhD Martha Weinstein, PhD Genetic Counselors: Judy Durcan, MS Yael Furman, MS Joan Kegerize, MS Melanie McDermet, MS Betsy Vibert, MS Fiona Wallace, MS Robin Wolf, MS Specialty Clinics: Satellite Clinics: Research Interests: Special Hours: Flexible Special Languages: Special Resources: Cancer Cytogenetics DNA PHELPS MEMORIAL HOSPITAL CENTER HSA: 6 Address : Phelps Memorial Hospital Center 701 North Broadway North Tarrytown, NY 10591 280 Mamaroneck Avenue (office) White Plains, NY 10605 Telephone: (914) 366-3553 (914) 997-6535 (office) FAX: (914) 997-6536 Staff: Director, Genetic Services: Pauline Brenholz, MD Specialty Clinics: Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: BROOKDALE HOSPITAL MEDICAL CENTER HSA/Borough: 7/Brooklyn Address: Brookdale Hospital Medical Center One Brookdale Plaza Brooklyn, NY 11212 Telephone: (718) 240-5883 Staff: Director and Cytogeneticist: Edmund Jenkins, PhD Edward J. Schutta, MD Medical Geneticist: Gabriel Kupchik, MD Specialty Clinics: Satellite Clinics: Research Interests: Special Hours: By request Special Languages: Hospital interpreters available Special Resources: DOR YESHORIM, INC. (COMMITTEE FOR PREVENTION OF JEWISH GENETIC DISEASES) HSA/Borough: 7/Brooklyn Address: Dor Yeshorim, Inc. 429 Wythe Avenue Brooklyn, NY 11211 Telephone: (718) 384-2332 FAX: (718) 384-2815 Staff: Executive Director: Rabbi Joseph Ekstein Medical Director: Harold Nitowsky, MD Director of Development: Rabbi Schmuel Lefkowitz Genetic Counselor: Frances Berkwits, MS Specialty Clinics: Satellite Clinics: Research Interests: This program coordinates pre-marital screening for Tay- Sachs and other genetic diseases and provides genetic counseling services to the religious Jewish community. Special Hours: Special Languages: Special Resources: INTERFAITH MEDICAL CENTER HSA/Borough: 7/Brooklyn Address: Interfaith Medical Center Brooklyn Jewish Site 555 Prospect Place Brooklyn, NY 11238 Telephone: (718) 935-7325 - Department of Medicine (718) 935-7410 - Department of Human Genetics (718) 935-6260 - Department of Pediatrics FAX: (718) 935-7872 Staff: Chief, Division of Human Genetics: Ernest Lieber, MD Director of Newborn Screening: Swayah Sadanandan, MD Genetic Counselor: Helene Ince, MS Health Educator: René Ulysse Specialty Clinics: Follow-up Clinic for patients with abnormal hemoglobins Newborn Screening Follow-up Clinic Orofacial/Dental Genetics Clinic Prenatal Clinics Sickle Cell Program Satellite Clinics: Lyndon Baines Johnson Family Health Center 276 Nostrand Avenue, Brooklyn 11205 New Bedford Maternal/Infant Care Center 1360 Fulton Street, Brooklyn 11215 Ralph Avenue Family Health Center 38 Ralph Avenue, Brooklyn 11221 Restoration Family Health Center Throop Avenue Family Health Center 485 Throop Avenue, Brooklyn 11221 Research Interests: Cancer genetics General genetics Hematological disorders Infertility Sickle cell disease Thalassemias Special Hours: Evening hours or weekend hours are available when arranged in advance Special Languages: Creole French Spanish Special Resources: Sickle cell/thalassemia patient education group Sickle cell/thalassemia patient support group Sickle cell/thalassemia fund raising network School education (general genetics and hemoglobinopathies) LONG ISLAND COLLEGE HOSPITAL HSA/Borough: 7/Brooklyn Address: Long Island College Hospital Division of Genetics 350 Henry Street Brooklyn, NY 11201 Telephone: (718) 780-1401 Staff: Chief, Division of Genetics: Karen L. David, MD Genetic Counselor: Monika Zak-Aptekar, MS (718) 780-1772 Specialty Clinics: Satellite Clinics: Research Interests: Cancer Genetics Fragile X Prenatal diagnosis Special Hours: Special Languages: Special Resources: STATE UNIVERSITY OF NEW YORK DOWNSTATE MEDICAL CENTER HSA/Borough: 7/Brooklyn Address: SUNY Downstate Medical Center Department of Pediatrics 450 Clarkson Avenue Brooklyn, NY 11203 Telephone: (718) 270-2924 (Obstetrics) FAX: (718) 270-1985 Staff: Senior Genetic Counselor: Eva Beller, MS Specialty Clinics: Birth Defects Clinic Developmental Evaluation Clinic Interdisciplinary NTD Clinic Regular and High Risk Obstetric Clinic Sickle Cell Disease Program Satellite Clinics: Brownsville Clinic East New York Clinic Research Interests: Congenital malformations Maternal and fetal cell mixtures in newborns by FISH Special Hours: Special Languages: French Hindustani Marathi Spanish Urdu Special Resources: Bereavement group THE NEUROLOGICAL INSTITUTE HSA/Borough: 7/Manhattan Address: The Neurological Institute Center for Parkinson's Disease and Other Movement Disorders 710 West 168th Street New York, NY 10032-3784 Telephone: (212) 305-4473 Fax: (212) 305-1304 E-mail: harris@movdis.cis.columbia.edu Staff: Director: Juliette Harris, MS, PhD Genetic Counselor: Jennifer Williamson, MS Specialty Clinics: Satellite Clinics: Research Interests: "International" focus on Parkinson's Disease Multiple Member/Siblings Special Hours: Special Languages: Special Resources: HOSPITAL FOR JOINT DISEASES/ ORTHOPĆDIC INSTITUTE HSA/Borough: 7/Manhattan Address: Hospital for Joint Diseases/Orthopćdic Institute Center for Neuromuscular and Developmental Disorders 301 East 17th Street New York, NY 10003 Telephone: (212) 598-6215 Fax: (212) 598-6351 Staff: Directors, Genetic and Growth Centers: Harry Ostrer, MD Robert Wallerstein, MD Genetic Counselor/Coordinator: Ellen Moran, MS Specialty Clinics: Arthrogryposis Clinic Birth Defects Clinic Connective Tissue Disorders Clinic Developmental Disorders/Cerebral Palsy Clinic Neurofibromatosis Clinic Neuromuscular Disorders Clinic Skeletal Dysplasias Clinic Spina Bifida Clinic Satellite Clinics: Research Interests: Cerebral palsy Connective tissue disorders Dysmorphology Skeletal dysplasias Special Hours: Special Languages: Spanish Special Resources: Comprehensive skeletal dysplasia clinical care program Early intervention program Muscular dystrophy program Orthopedic specialty clinics Psychosocial support services Rehabilitation services/speech therapy NEW YORK DOWNTOWN HOSPITAL HSA/Borough: 7/Manhattan Address: New York Downtown Hospital 170 Williams Street New York, NY 10038 Telephone: (212) 312-5880 FAX: Staff: Genetic Counselor: Sandra Cohen, MS Specialty Clinics: Satellite Clinics: Mercy Street Medical Hospital Research Interests: Special Hours: Special Languages: French Hebrew Spanish Special Resources: Thalassemia Program THE NEW YORK HOSPITAL - CORNELL MEDICAL CENTER HSA/Borough: 7/Manhattan Address: The New York Hospital Division of Human Genetics Department of Pediatrics Room HT-150 525 East 68th Street New York, NY 10021 Telephone: (212) 746-1496 FAX: (212) 746-8893 Staff: Co-Directors: Jessica G. Davis, MD Fred Gilbert, MD Clinical Geneticists: Philip Giampietro, PhD, MD Obstetricians/Gynecologist: Stephen T. Chasen, MD Frank Chervenak, MD Coordinator, Genetic Counseling Program: Heather Kamen, MS Genetic Counselors: Katherine Beaverson, MS Ann Carlson, MS Susan Larousse, MS Denise Levy, MS Gladys Rosenthal, MS Niecee Singer, MS Judith Widmann, MA, MS Cytogeneticists: M. Lita Alonso, MD Arleen D. Auerbach, PhD Raju S. Chaganti, PhD James German, III, MD Meira F. Shaham, PhD Director, Alpha-Fetoprotein Laboratory: Daniel M. Knowles, MD Specialty Clinics: Craniofacial Clinic Fanconi Anemia Clinic Hemophilia Clinic Marfan Syndrome/Mitral Valve Prolapse/Other Connective Tissue Disorders Program Muscular Dystrophy Clinic Myelomeningocele Clinic Neurofibromatosis Clinic Osteogenesis Imperfecta Clinic Retinoblastoma Clinic Skeletal Dysplasia Clinic Thalassemia Clinic Satellite Clinics: Brooklyn Hospital Chinatown Health Clinic The Hospital for Special Surgery The New York Hospital (Bronx) - Lincoln Hospital, St. Barnabas Hospital The New York Hospital - Queens Division (Booth and Flushing) Research Interests: Cancer genetics Chromosomal breakage syndromes Cystic fibrosis Delineation of new syndromes Disorders of the adrenal gland Hematologic disorders Marfan syndrome and other connective tissue disorders Molecular genetics Prenatal diagnosis X chromosome gene mapping Special Hours: As needed by appointment Special Languages: Chinese French Hebrew Italian Spanish Special Resources: Antenatal testing for congenital adrenal hyperplasia Chorionic villus sampling DNA diagnostic laboratory Institute for Genetic Medicine Maternal serum alpha-fetoprotein testing program Molecular testing for congenital adrenal hyperplasia Periumbilical blood sampling Special cytogenetic studies Special hematologic studies NEW YORK STATE PSYCHIATRIC INSTITUTE HSA/Borough: 7/Manhattan Address: New York State Psychiatric Institute Department of Medical Genetics 1051 Riverside Drive New York, NY 10032 Telephone: (212) 543-2475 FAX: (212) 543-6002 Staff: Director: L. Erlenmeyer-Kimling, PhD, DSc Clinical Geneticists: Miron Baron, MD Jill Harkang-Friedman, PhD Charles Kaufmann, MD Dolores Malaspina, MD Nancy Wexler, PhD Molecular Geneticists: T. Conrad Gilliam, PhD James A. Knowles, MD, PhD Genetic Counselor: Graciela Penchaszadeh, MS Specialty Clinics: Psychiatric Disorders Clinic Satellite Clinics: Research Interests: Bipolar disorders Genetics of psychiatric disorders Huntington's disease Molecular genetics Schizophrenia Suicide Special Hours: Special Languages: Hebrew Spanish Special Resources: DNA research laboratory STATEN ISLAND UNIVERSITY HOSPITAL HSA/Borough: 7/Staten Island Address: Staten Island University Hospital 475 Sequine Avenue Staten Island, NY 10309 Telephone: (718) 226-2884/2888 FAX: (718) 226-2722 Staff: Director of Laboratories: Karl W. Lanks, MD, PhD Clinical Geneticist: Susan Sklower Brooks, MD Perinatologist: James Ducey, MD Jonathan Mays, MD Specialty Clinics: Cleft Lip/Cleft Palate Clinic Satellite Clinic: Research Interests: Cancer cytogenetics Molecular Genetics Special Hours: Special Languages: Special Resources: CVS Early amniocentesis Fetal electrocardiogram High resolution sonography High-risk obstetrics Missed abortions ST. MARY'S HOSPITAL FOR CHILDREN HSA/Borough: 7/Queens Address: St. Mary's Hospital for Children 29-01 216th Street Bayside, NY 11360 Telephone: (718) 281-8800 FAX: (718) 279-2141 (Please note on the fax: Attention - Genetics Department) Staff: Director and Clinical Geneticist: Kwame Anyane-Yeboa, MD Pediatric Geneticist: Nelly Jouayad, MD Coordinator and Genetic Counselor: Dolores Savage, BSRN, MS Genetic Counselor: Theresa Dugger, MS Specialty Clinics: Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: Inpatient Children's Hospice Inpatient rehabilitative care for children with birth defects BETHPAGE OB/GYN HSA: 8 Address: Bethpage Ob/Gyn 4277 Hempstead Turnpike Bethpage, NY 11714 Telephone: (516) 731-5100 FAX: (516) 731-3758 Staff: Genetic Counselor: Stephanie Tobin-Stern, MS Specialty Clinics: Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: THE GENETICS CENTER HSA: 8 Address: The Genetics Center 48 Route 25A, Suite 205 Smithtown, NY 11787 Telephone: (631) 862-3620 FAX: (631) 862-3622 Web page: www.thegeneticscenter.com E-mail: info@thegeneticscenter.com Staff: Medical Geneticist and Clinical Cytogeneticist: Carolyn Trunca, PhD Clinical, Biochemical and Molecular Geneticist: David B. Hyman, MD Cancer Cytogenetics: Judith Wieland, PhD Genetic Counselor: Sean N. Bryan, MS Specialty Clinics: Satellite Clinics: Research Interests: Cancer genetics Gene mapping by in situ hybridization Human meiosis Metabolic disorders Special Hours: Evenings and Saturdays by appointment Special Languages: German Special Resources: Counseling for high risk cancer families NORTH SHORE UNIVERSITY HOSPITAL HSA: 8 Address: North Shore University Hospital Division of Medical Genetics 300 Community Drive Manhasset, NY 11030 Telephone: (516) 365-3996 FAX: (516) 365-4597 Staff: Chief, Division of Medical Genetics: Martin G. Bialer, MD, PhD Clinical Geneticists: Lakshmi Mehta, MD Director, Genetic Research Laboratory: Robert Pergolizzi, PhD Supervising Genetic Counselor: Gittel Silverberg, MS Genetic Counselors: Yelena Kemel, MS Jill Lundberg, MS Carrie McKenna, MS Julie McLaughlin, MS Sujatha Sastry, MS Kara Small, MS Specialty Clinics: Ashkenazi Jewish Screening Program Cancer Genetics Counseling Huntington's Disease Program Marfan Syndrome Clinic Neurofibromatosis Clinic Satellite Clinics: Huntington Hospital West Islip Pediatric Subspecialty Group Research Interests: Dysmorphology Familial breast cancer Fragile X syndrome Huntington disease Neurofibromatosis Prenatal diagnosis Sex chromosome abnormalities Williams syndrome X-linked mental retardation Special Hours: Special Languages: Hindi Special Resources: Chorionic villus sampling Interphase FISH (prenatal) Periumbilical blood sampling Teratogen counseling LAUREN LYNCH, MD HSA: Address: 1492 Ponce de Leon Avenue Suite 718 San Juan, PR Telephone: (787) 725-6969 FAX: (787) 721-0305 Staff: Director: Lauren Lynch, MD Specialty Clinics: Prenatal diagnosis and therapy Satellite Clinics: Research Interests: Special Hours: Special Languages: English Spanish Special Resources: PONCE SCHOOL OF MEDICINE HSA: Address: Ponce School of Medicine Genetic Division P.O. Box 7004 Ponce, PR 00732 Telephone: (787) 840-2575, ext. 2213 Fax: (787) 840-5698 Staff: Director: Alberto Santiago-Cornier, MD Genetic Counselor: Diana Valencia, MS Clinical Geneticists: Mirna Borges, MD Simón Carlo, MD Investigator: Idhaliz Flores, PhD Specialty Clinics: Satellite Clinics: Arecibo Bayamón Mayaguez Ponce Research Interests: Cystic fibrosis mutations in Puerto Rican population Leptin analysis Linkage mapping - polymorphism, Bardet Biedl and Jarcho- Levin Syndromes Special Hours: Special Languages: English Spanish Special Resources: Biochemical diagnostics DNA laboratory Molecular diagnostics UNIVERSIDAD DE PUERTO RICO HSA: Address: Universidad de Puerto Rico Recinto de Ciencias Médicas Programa de Enfermedades Heritarias de Puerto Rico P.O. Box 365067 San Juan, PR 00936-5067 Telephone: (787) 777-3535 Fax: (787) 751-5812 Staff: Directors: Enid Caragol-Rivera, MD Lillian González-Pijem, MD Pedro J. Santiago-Borrero, MD Specialty Clinics: Enfermedades metabólicas Fenilcetonuria Hemoglobinopatias Hemofilia Hipotiroidismo Talasemia Satellite Clinics: Hematology Clinic, University Pediatric Hospital Research Interests: Genetic mutations of hemophilia and HbS Special Hours: Special Languages: Spanish Special Resources: Hemofilias Hemoglobinopatias Human genetics laboratories Metabolic genetic diseases and basic science NEW YORK STATE PERMITTED CYTOGENETIC LABORATORIES The current status of a laboratory's clinical license may be verified with the following Wadsworth Center offices and the Wadsworth Center website: Cytogenetic Quality Assurance Program Ann M. Willey, PhD, JD Nanette P. Healy (518) 474-6796 Clinical Laboratory Evaluation Program Deirdre Astin (518) 485-5378 Clinical Laboratory Evaluation Program Cytogenetics Category Website: www.wadsworth.org/labcert/clep/links_for_CYTO.html Laboratories are issued permits in one or more categories based on the diagnostic services that are offered. The permit subcategories are: Cancer Cytogenetics Laboratories may perform cytogenetic evaluations of blood dyscrasias and acquired cytogenetic changes of neoplasias. Limited Cytogenetics Laboratories may perform cytogenetic tests exclusive of prenatal diagnosis and cancer cytogenetics. Prenatal Cytogenetics Laboratories may perform prenatal cytogenetic diagnosis. HSA 1 # 4320 Richard W. Erbe, MD KALEIDA HEALTH Cancer (716) 878-7530 CHILDREN'S GENETIC LABORATORY Limited 936 Delaware Avenue Prenatal Buffalo, NY 14209 # 3356 Michelle J. Marinello, PhD GENETIC DIAGNOSTIC Cancer (716) 881-4865 LABORATORIES, INC. Limited 490 Delaware Avenue Prenatal Buffalo, NY 14202 # 2002 AnneMarie Block, PhDROSWELL PARK CANCER INSTITUTE CORP. Cancer (716) 845-4491 Cytogenetics Laboratory Limited Elm and Carlton Streets Buffalo, NY 14263 HSA 2 # 2093 Nancy Wang, PhD UNIVERSITY OF ROCHESTER - Cancer (716) 275-5859 STRONG MEMORIAL HOSPITAL Limited Cytogenetics Laboratory Prenatal 601 Elmwood Avenue, Box 777 Rochester, NY 14642 HSA 3 # 2220 Constance Stein, PhD SUNY UPSTATE MEDICAL CENTER Cancer (315) 473-4716 Cytogenetics, Clinical Pathology Limited 750 Adams Street Prenatal Syracuse, NY 13210 HSA 5 # 1485 Betty A. Harrison, MS ALBANY MEDICAL CENTER Cancer (518) 626-0681 Cytogenetics Laboratory Limited 113 Holland Avenue Prenatal Albany, NY 12208 # 1067 Ann M. Willey, PhD, JDNEW YORK STATE DEPARTMENT OF HEALTH Cancer (518) 474-6796 Cytogenetics Laboratory Limited Wadsworth Center Prenatal Empire State Plaza Albany, NY 12201-0509 HSA 6 # 4017 Martha Weinstein, PhD GENZYME GENETICS Cancer (914) 347-3443 100 Corporate Drive Limited Yonkers, NY 10701 Prenatal # 4589 Chandrika Sreekantaiah, PhD UNIVERSITY PATHOLOGY Cancer (914) 345-3007 REFERENCE LABORATORY Limited 4 Skyline Drive Prenatal Hawthorne, NY 10532 HSA 7/Bronx # 2465 Linda Cannizzaro, PhD MONTEFIORE MEDICAL CENTER Cancer (718) 920-4523 Department of Pathology Limited Henry and Lucy Moses Division 111 East 210th Street Bronx, NY 10467 # 4191 Harold M. Nitowsky, MDMONTEFIORE MEDICAL CENTER/EINSTEIN Cancer (718) 430-4195 COLLEGE Limited Reproductive Genetics Laboratory Prenatal 1635 Poplar Street Bronx, NY 10461 HSA 7/Brooklyn # 4581 Edmund Jenkins, PhDTHE BROOKDALE HOSPITAL MEDICAL Cancer (718) 240-6018 CENTER Limited Cytogenetics Laboratory Prenatal One Brookdale Plaza Brooklyn, NY 11212 # 3807 Maryala Krishna, PhDINTERSCIENCE DIAGNOSTIC LABS, INC. Cancer (718) 745-0443 6912 Fort Hamilton Parkway Limited Brooklyn, NY 11228 Prenatal # 4579 Harvey Dosik, MD NEW YORK METHODIST HOSPITAL Cancer Ernest Lieber, MD 506 Sixth Street, Box 159008 Limited (718) 780-3258 Brooklyn, NY 11215-9008 # 7448 Arvind Babu, PhD WYCKOFF HEIGHTS MEDICAL CENTER Cancer (718) 963-6100 Cytogenetics Laboratory Limited 374 Stockholm Street Prenatal Brooklyn, NY 11237 HSA 7/Manhattan # 3953 Jar-Fee Yung, PhD IMPATH, INC. Cancer (212) 698-0300 521 West 57th Street, 6th Floor Limited New York, NY 10019 # 5405 Raju S. Chaganti, PhD MEMORIAL HOSPITAL-SLOAN Cancer (212) 639-6402 KETTERING CANCER CENTER Limited 1275 York Avenue New York, NY 10021 # 3516 Robert J. Desnick, PhD, MOUNT SINAI MEDICAL CENTER Limited MD Genetics Testing Laboratory Prenatal (212) 241-6947 One Gustave L. Levy Place New York, NY 10029 # 5227 Vesna Najfeld, PhD MOUNT SINAI MEDICAL CENTER Cancer (212) 650-8816 Tumor Cytogenetics Laboratory One Gustave L. Levy Place New York, NY 10029 # 3651 M. Lita Alonso, MD THE NEW YORK HOSPITAL-CORNELL Cancer (212) 746-2437 MEDICAL CENTER Limited 525 East 68th Street, Room F-715 Prenatal New York, NY 10021 # 5310 Dorothy Warburton, PhDNEW YORK PRESBYTERIAN HOSPITAL Cancer (212) 305-3020 Genetics Diagnostics Laboratory Limited Babies Hospital Prenatal 627 West 168th Street New York, NY 10032 # 4748 Mary Ann Perle, PhDNEW YORK UNIVERSITY MEDICAL CENTER Cancer (212) 263-6454 New Bellevue Hospital Limited Room 4N20 Prenatal 550 First Avenue New York, NY 10016 # 3492 Arleen D. Auerbach, PhDTHE ROCKEFELLER UNIVERSITY Limited (212) 327-8862 HOSPITAL Prenatal Section of Cytogenetics (Restricted to 1230 York Avenue Fanconi Anemia) New York, NY 10021 HSA 7/Queens # 1089 Ann-Leslie Zaslav, PhD NORTH SHORE LONG ISLAND Cancer (718) 326-1953 JEWISH MEDICAL CENTER Limited Division of Human Genetics Prenatal 270-05 76th Avenue, Room B315 New Hyde Park, NY 11040 HSA 7/Staten Island # 2516 Edmund C. Jenkins, PhDIBR SPECIALTY CLINICAL LABORATORIES Limited (718) 494-5236 1050 Forest Hill Road Prenatal Staten Island, NY 10314 HSA 8 # 4207 Carolyn Trunca, PhD THE GENETICS CENTER Cancer (631) 862-3620 48 Route 25A, Suite 205 Limited Smithtown, NY 11787-1448 Prenatal # 2157 Harshad Shah, PhD NASSAU COUNTY MEDICAL CENTER Cancer (516) 542-3454 2210 Hempstead Turnpike Limited East Meadow, NY 11554 Prenatal # 2163 Prasad Koduru, PhD NORTH SHORE UNIVERSITY HOSPITAL Cancer (516) 562-4443 Cytogenetics Laboratory Limited 300 Community Drive Prenatal Manhasset, NY 11030 # 2336 Joseph Lanman, PhD SUNY AT STONY BROOK Cancer (631) 444-2749 University Hospital Limited Department of Laboratories Prenatal Stony Brook, NY 11794 # 2124 Prasad Koduru, PhD WINTHROP UNIVERSITY HOSPITAL Cancer (516) 663-2443 Cytogenetics Laboratory Limited 259 Station Plaza North, Suite 618 Prenatal Mineola, NY 11501 Out of State # 3654 Jin-Chen Wang, MD ALFIGEN, INC. Cancer (800) 255-1616 11 West Del Mar Boulevard Limited Pasadena, CA 91105 Prenatal # 3745 Shelly Kerman, MDAMERICAN MEDICAL LABORATORIES, INC. Cancer (703) 802-6900 14225 Newbrook Drive Limited Chantilly, VA 22021 # 4306 Roger V. Lebo, PhD BOSTON UNIVERSITY MEDICAL SCHOOL Cancer (617) 638-7083 Center for Human Genetics Limited DNA Diagnostic Laboratory 700 Albany, Street, Room 408 Boston, MA 02118 # 7456 Ramana V. Tantravahi, PhD CANCER GENETICS, INC. Cancer (617) 576-2155 100 Inman Street, Suite 100 Cambridge, MA 02139 # 3327 Jacqueline Burns, PhD DANBURY HOSPITAL Cancer (203) 797-7046 Cytogenetics Laboratory Limited 24 Hospital Avenue Prenatal Danbury, CT 06810 # 5472 Daniel Stetka, PhD DIAGENETICS Cancer (540) 720-4010 422 Garrisonville Road Limited Suite 110 Prenatal Stafford, VA 22554 # 3202 Steven Gersen, PhD DIANON SYSTEMS, INC. Cancer (203) 381-4544 200 Watson Boulevard Limited Stratford, CT 06497 Prenatal # 4023 James Mixon, MD ESOTERIX ONCOLOGY Cancer (615) 370-8393 201 Summit Drive, Suite 100 Brentwood, TN 37027 # 7462 Jerome I. McCombs, PhD ESOTERIX ONCOLOGY Cancer (512) 443-4363 1524 South I.H. 35, Suite 200 Limited Austin, TX 78733 # 3584 Elizabeth F. Allen, PhDFLETCHER ALLEN HEALTH CARE Cancer (802) 656-3565 Cytogenetics Laboratory Limited 111 Colchester Avenue, MCHV Campus Prenatal Burlington, VT 05401 # 4398 Philip D. Buchanan, PhD GENECARE Cancer (919) 942-0021 120 Connor Drive, Suite 201 Limited Chapel Hill, NC 27514 Prenatal # 4116 Lillian Killos, PhD GENETICS & IVF INSTITUTE Cancer (800) 654-4363 3022 Javier Road Limited Fairfax, VA 22031 Prenatal # 3349 Allen Lamb, PhD GENZYME GENETICS Cancer (800) 848-4436 2000 Vivigen Way Limited Santa Fe, NM 87505 Prenatal # 5860 Robert C. Miller, PhD GENZYME GENETICS - TAMPA Limited (800) 966-444010770 North 46th Street, Suite A100 Prenatal Tampa, FL 33617 # 4904 Christine Stephenson, PhD IMPATH-HDC, INC. Cancer (602) 257-8955 810 East Hammond Lane Limited Phoenix, AZ 85034 Prenatal # 5469 Janice L. Smith, PhD LABORATORIES FOR GENETIC Cancer (713) 798-9500 SERVICES Limited 7400 Fannin, Suite 1200 Prenatal Houston, TX 77054 # 4180 Peter Papenhausen, PhD LABORATORY CORPORATION OF Cancer (800) 533-0567 AMERICA HOLDINGS Limited 1912 Alexander Drive Prenatal Research Triangle Park, NC 27709 # 3263 Gordon DeWald, PhDMAYO COLLABORATIVE SERVICES, INC. Cancer (507) 284-2950 200 First Street, SW Limited Hilton Building 530 Prenatal Rochester, MN 55905 # 2499 James Ray, PhD QUEST DIAGNOSTICS, INC. Cancer (201) 736-0640 1 Malcolm Avenue Limited Teterboro, NJ 07608 Prenatal # 2478 Bevery White, MD QUEST DIAGNOSTICS, INC. Cancer (800) 642-4657 33608 Ortega Highway Limited San Juan Capistrano, CA 92690 Prenatal # 2477 JoAnn Kelly, PhD QUEST DIAGNOSTICS, INC. Cancer (800) 877-7003 7600 Tyrone Avenue Limited ext. 6188 Van Nuys, CA 91405 Prenatal # 3197 Lang-Chau Pham, MD SPECIALTY LABORATORIES, INC. Cancer (800) 421-7110 2211 Michigan Avenue Limited Santa Monica, CA 90404 Prenatal # 7447 Leonard J. Sciorra, PhD UNIVERSITY OF MEDICINE & Cancer (732) 235-7042 DENTISTRY OF NEW JERSEY Limited 125 Patterson Street New Brunswick, NJ 08901 NEW YORK STATE GENETIC TESTING LABORATORIES In this section, laboratories holding NYS permits to do genetic testing, either biochemistry or DNA-based, are listed, first geographically, then alphabetically starting on page 17. On page 5 the approved DNA-based analytes or diseases are listed alphabetically followed by those laboratories approved to do that particular testing. On page 14 are listed those biochemistry-based analytes or diseases and laboratories approved to perform those tests. CATEGORY DESCRIPTION Laboratories performing procedures for the purpose of providing information for the diagnosis of a genetic disease or its carrier state must hold a clinical laboratory permit in the genetic testing category. Methodologies may include, but are not limited to, enzymology, substrate quantification and DNA-based analysis. Laboratories with genetic testing permits are divided into two permit categories based upon whether they perform biochemical or DNA-based analyses. Non-genetic application of these methodologies is excluded from approval in the genetic testing category. Examples of non-approved activities include paternity testing, forensic testing, tissue typing services and the determination of acquired changes in genetic material such as T or B cell markers, BCR rearrangement, immunoglobulin heavy- or light-chain rearrangements associated with malignancy or monitoring bone marrow engraftment following transplantation. INFORMED CONSENT In 1990 the New York State Clinical Laboratory Evaluation Program recognized the need for informed consent in the laboratory diagnosis of genetic disease by establishing practice standards for genetic testing laboratories. In 1996 and 1997 the State legislature strengthened the informed consent requirements by amending the New York State civil rights law in relation to genetic testing. All parties involved in the genetic testing process are encouraged to familiarize themselves with these principles of informed consent and confidentiality. Pertinent pieces of Section 79-1 of the civil rights law are abstracted here. 79-1(a) "genetic test" shall mean any laboratory test of human DNA, chromosomes, genes, or gene products to diagnose the presence of a genetic variation linked to a predisposition to a genetic disease or disability in the individual or the individual's offspring; such term shall also include DNA profile analysis. "Genetic test" shall not be deemed to include any test of blood or other medically prescribed test in routine use that has been or may be hereafter found to be associated with a genetic variation, unless conducted purposely to identify such genetic variation. 2(a) No person shall perform a genetic test on a biological sample taken from an individual without the prior written informed consent of such individual as provided in paragraph (b) of this subdivision, except as otherwise provided in paragraph (c) of subdivision two and by subdivision nine of this section. (b) Written informed consent to a genetic test shall consist of written authorization that is dated and signed and includes at least the following: (1) a general description of the test; (2) a statement of the purpose of the test; (a) a statement indicating that the individual may wish to obtain professional genetic counseling prior to signing the informed consent. (3) a statement that a positive test result is an indication that the result is an indication that the individual may be predisposed to or have the specific disease or condition tested for and may wish to consider further independent testing, consult their physician or pursue genetic counseling; (4) a general description of each specific disease or condition tested for; (5) the level of certainty that a positive test result for that disease or condition serves as a predictor of such disease. If no level of certainty has been established, this subparagraph may be disregarded; (6) the name of the person or categories of persons or organizations to whom the test results may be disclosed; (7) a statement that no tests other than those authorized shall be performed on the biological sample and that the sample shall be destroyed at the end of the testing process or not more than sixty days after the sample was taken, unless a longer period of retention is expressly authorized in the consent; and (8) the signature of the individual subject of the test or, if that individual lacks the capacity to consent, the signature of the person authorized to consent for such individual. 3(a) All records, findings and results of any genetic test performed on any person shall be deemed confidential and shall not be disclosed without the written informed consent of the person to whom such genetic test relates. This information shall not be released to any person or organization not specifically authorized by the individual subject of the test... UNAPPROVED LABORATORIES Standards governing medical and clinical laboratory practice in New York stipulate that laboratory testing be performed in appropriately permitted clinical laboratories. However, due to the rarity of many genetic conditions it is anticipated that diagnostic testing may not be available from a permitted clinical laboratory. In these cases Departmental approval must be obtained before a specimen from a New York State resident is referred to a non- permitted laboratory. In order to avoid possible legal or administrative charges, Departmental approval must be sought for each specimen that will be referred for testing. Approval will be granted if: 1) the required test is not provided by a laboratory holding a valid New York State clinical laboratory permit; 2) the clinical condition involved is rare (incidence of less than 1/100,000); or 3) the required testing is limited to a single laboratory due to the complexity of the test methodology and/or limited availability of reagents. It is the responsibility of the physician or laboratory ordering the test to document that the patient or their legal guardian has been informed that the diagnostic testing laboratory does not hold a New York State operating permit. Departmental approval to refer a specimen for diagnostic testing to a non- permitted laboratory should not be considered in any way an endorsement of the laboratory's competence or a guarantee that the laboratory has complied with relevant Federal and/or State regulations. Request forms for approval to use a non-permitted laboratory for genetic testing are available from and should be submitted to: Michele Caggana, ScD Genetic Testing Quality Assurance Program Wadsworth Center, P.O. Box 509 New York State Department of Health Albany, NY 12201-0509 Telephone (518) 474-6271 / Fax (518) 486-2693 caggana@wadsworth.org Request forms are available from the Genetic Testing Quality Assurance Program and must include the following information: Patient name or other identifier Disease(s) involved Specimen type (blood, plasma, urine, cultured cells) Test requested Reason/justification for request Name, address and telephone number of the physician or clinical laboratory submitting the request for approval Name, address and director of the reference laboratory chosen to provide the testing service The program will respond to each request for permission to use an unlicensed laboratory in writing. If a request is denied, the reasons for doing so will be explained in the response. PERMITTED LABORATORIES In the genetic testing category a laboratory's approval to provide testing is disease, analyte and method specific. Therefore, the current status of a laboratory's permit and/or the list of diagnostic services they are approved to offer should be verified with the program office or the website: Genetic Testing Quality Assurance Program Michele Caggana, ScD (518) 474-6271 Clinical Laboratory Evaluation Program Deirdre Astin (518) 485-5378 Genetic Testing Website: www.wadsworth.org/labcert/clep/links_for_GETE.html The laboratories currently holding genetic testing permits are presented in the following pages. The first list is the abbreviations used for the analytes. The laboratories are then listed alphabetically with their PFI numbers, noting Health Service Area and Permit Category. The next pages are tables, by PFI number, showing the analytes permitted for each laboratory. The final list is specific information for each laboratory. They are listed alphabetically within the NYS HSAs or out-of-state. Information on each laboratory includes the director(s) and laboratory name, address, telephone and fax number, and whether the laboratory has permits for DNA-based or biochemistry analysis. PFI and Permit Classification of Genetic Testing Laboratories PFI DNA Biochemistry Number Institution Based Based 1901 Albany Medical Center Hospital, HSA 5 X 2093 University of Rochester/Strong, HSA 2 X X 2157 Nassau County Medical Center, HSA 8 X 2220 SUNY - Upstate Medical University, HSA 3 X 2336 SUNY at Stony Brook, HSA 8 X 2465 Montefiore Medical Center (Dr. Sussman), HSA 7-Bronx X 2478 Quest Diagnostics, Inc., California X 2499 Quest Diagnostics, Inc., New Jersey X 2516 IBR Specialty Clinical Laboratories, HSA 7-Staten Island X X 3142 Scripps Reference Laboratory, California X 3202 Dianon Systems, Inc., Connecticut X 3263 Mayo Medical Laboratories, Minnesota X X 3492 The Rockefeller University, HSA 7-Manhattan X 3516 Mount Sinai Medical Center, HSA 7-Manhattan X X 3651 The New York Hospital Laboratories, HSA 7-Manhattan X 4116 Genetics & IVF Institute, Virginia X 4118 Athena Diagnostics, Inc., Massachusetts X X 4121 Thomas Jefferson University, Pennsylvania X 4165 Genzyme Genetics, Inc., Massachusetts X 4169 Children's Hospital of Philadelphia, Pennsylvania X 4180 Laboratory Corporation of America Holdings, North Carolina X X 4191 Montefiore Medical Center (Dr. Nitowsky), HSA 7-Bronx X X 4196 Associated Regional and University Pathologists, Utah X 4197 North Shore Long Island Jewish Medical Center Laboratories, HSA 8 X 4201 Columbia-Presbyterian (Dr. Brown), HSA 7-Manhattan X 4253 Johns Hopkins Hospital (Dr. Cutting), Maryland X 4254 Columbia-Presbyterian (Dr. Piomelli), HSA 7-Manhattan X X 4306 Boston University Medical School, Massachusetts X 4320 Kaleida Health Children's Genetic Laboratory, HSA 1 X X 4355 Eunice Kennedy Shriver Center, Massachusetts X 4584 Baylor College of Medicine, Texas X 4733 Neo Gen Screening LP, Pennsylvania X 4987 The Blood Center of Southeastern Wisconsin, Wisconsin X PFI DNA Biochemistry Number Institution Based Based 4999 Columbia-Presbyterian (Dr. Naini), HSA 7-Manhattan X 5016 Wilson's Disease Laboratory, HSA 7-Manhattan X 5293 New York Hospital-Cornell (Dr. New), HSA 7-Manhattan X 5405 Memorial Hospital-Sloan Kettering Cancer Center, HSA 7-Manhattan X 5411 New York University (Dr. Ostrer), HSA 7-Manhattan X X 5414 Myriad Genetic Laboratories, Utah X 5419 New York University (Dr. Kolodny), HSA 7-Manhattan X X 5437 Esoterix Coagulation, Colorado X 5445 ITxM Diagnostics, Inc., Pennsylvania X 5451 St. Louis University, Missouri X 5453 Clinigene Medical Specialty Laboratory, New Jersey X X 5459 New York Hospital-Cornell (Dr. Gilbert), HSA 7-Manhattan X 5479 University of Washington, Washington X 5803 Baylor University Medical Center, Texas X 5805 Prometheus Laboratories, Inc., California X 7313 Molecular Pathology DNA Laboratory of Columbia University College, HSA 7-Manhattan X 7405 Male Infertility Genetics Laboratory of Cornell Medical College, HSA 7-Manhattan X 7422 Kimball Genetics, Inc., Colorado X HSA 1 # 4320Richard W. Erbe, MDKALEIDA HEALTH CHILDREN'S Biochemistry (716) 878-7530GENETIC LABORATORY DNAFax (716) 878-7980 936 Delaware Avenue Buffalo, NY 14209 HSA 2 # 2093Daniel H. Ryan, MDUNIVERSITY OF ROCHESTER/ Biochemistry (716) 275-5891STRONG MEMORIAL HOSPITAL DNAFax (716) 273-1101 Clinical Laboratories 601 Elmwood Avenue, Box 608 Rochester, NY 14642 HSA 3 # 2220Antony E. Shrimpton, PhDSUNY – UPSTATE MEDICAL CENTER DNAGregory A. Threatte, MDClinical Pathology Laboratory (315) 464-4460750 East Adams Street Fax (315) 464-6817Syracuse, NY 13210 HSA 5 # 1901Richard A. Venezia, PhDALBANY MEDICAL CENTER DNAKathleen Stellrecht, PhDClinical Microbiology Lab, A-22 (518) 262-3506 Room C-135 Fax (518) 262-4337New Scotland Avenue Albany, NY 12208 HSA 6 # 4179Michael Frey, PhDPEDIATRIC SPECIALTY LAB Biochemistry (914) 594-4602Children's Physicians of Fax (914) 594-4857 Westchester Munger Pavillion, Room 103 Valhalla, NY 10595 HSA 7/Bronx # 4191Harold M. Nitowsky, MDMONTEFIORE MEDICAL CENTER Biochemistry (718) 405-8100EINSTEIN COLLEGE DNAFax (718) 931-7738Reproductive Genetics Lab 1635 Poplar Street Bronx, NY 10461 # 2465Howard Sussman, MDMONTEFIORE MEDICAL CENTER DNA (718) 920-4523Henry & Lucy Moses Division Fax (718) 881-2976 Department of Pathology 111 East 210th Street Bronx, NY 10467 HSA 7/Manhattan # 4201Steven A. Brown, MDCOLUMBIA UNIVERSITY DNA (212) 305-7317DNA Diagnostic Laboratory Fax (212) 305-3869630 West 168th Street, P&S 16-437 New York, NY 10032 # 4999Ali B. Naini, PhDCOLUMBIA UNIVERSITY DNA (212) 305-2118Molecular Neurogenetics BiochemistryFax (212) 305-3986 630 West 168th Street P&S 4-448 New York, NY 10032 # 7313Vundavalli V.V.S. Murty, PhDCOLUMBIA UNIVERSITY DNA (212) 305-9706Molecular Pathology Laboratory Fax (212) 305-5498630 West 168th Street P&S VC14236 New York, NY 10032 # 7405Peter N. Schlegel, MD CORNELL MEDICAL COLLEGE DNA (212) 327-8740Male Infertility Genetics Fax (212) 746-8425 Laboratory 1188 York Avenue, Room 530 New York, NY 10021 # 5258Steven S. Witkin, PhDWEILL MEDICAL COLLEGE OF DNA (212) 746-3165CORNELL UNIVERSITY 515 East 71st Street New York, NY 10021 # 5405Raju S. Chaganti, PhDMEMORIAL HOSPITAL- DNANathan Ellis, PhDSLOAN KETTERING CANCER CENTER (212) 639-6402Department of Human Genetics Fax (212) 717-35711275 York Avenue New York, NY 10021 # 3516Robert J. Desnick, MD, PhDMOUNT SINAI MEDICAL CENTER Biochemistry (212) 241-6947Genetic Testing Laboratory DNA Fax (212) 860-3316One Gustave Levy Place Box 1497 New York, NY 10029-6574 # 5459Fred Gilbert, MDTHE NEW YORK HOSPITAL- DNA (212) 746-3475CORNELL MEDICAL CENTER Fax (212) 746-8893DNA Diagnosis Laboratory 515 East 71st Street, S-608 New York, NY 10021 # 3651M. Desmond Burke, MDTHE NEW YORK HOSPITAL- DNA (212) 746-2041CORNELL MEDICAL CENTER Fax (212) 746-8855525 East 68th Street, Rm F-715 New York, NY 10021 # 5293Maria I. New, MDNEW YORK PRESBYTERIAN DNA (212) 746-1859 HOSPITAL Fax (212) 746-8541Laboratory of Pediatric Endocrinology 525 East 68th Street, Room M622 New York, NY 10021 # 4254Sergio Piomelli, MDNEW YORK PRESBYTERIAN Biochemistry (212) 305-6531 HOSPITAL DNAFax (212) 305-7662Pediatric Hematology-Oncology Laboratory 622 West 168th Street New York, NY 10032 # 5419Edwin Kolodny, MD NEW YORK UNIVERSITY Biochemistry (212) 263-7635 MEDICAL CENTER DNAFax (212) 263-1018Neurogenetics Laboratory 400 East 34th Street, RR 220 New York, NY 10016 # 5411Harry Ostrer, MDNEW YORK UNIVERSITY Biochemistry (212) 263-7621 MEDICAL CENTER DNAFax (212) 562-2642Molecular Genetics Laboratory 550 First Avenue New York, NY 10016 # 3492Arleen D. Auerbach, PhDTHE ROCKEFELLER UNIVERSITY DNA (212) 327-8862 HOSPITAL Fax (212) 327-8262Section of Cytogenetics 1230 York Avenue New York, NY 10021-6399 # 5016I. Herbert Scheinberg, MDWILSON'S DISEASE LABORATORY Biochemistry (212) 523-8717432 West 58th Street, Suite 614 Fax (212) 523-8708New York, NY 10019 HSA 7/Staten Island # 2516Edmund C. Jenkins, PhDIBR SPECIALTY CLINICAL Biochemistry (718) 494-5236 LABORATORIES DNAFax (718) 494-06941050 Forest Hill Road Staten Island, NY 10314 HSA 8 # 5453 Linda Bradley, PhD CLINIGENE MEDICAL SPECIALTY Biochemistry (800) 299-3819 LABORATORY DNA Fax (631) 435-1552 240 Motor Parkway Hauppauge, NY 11788 # 2157 Jen H. Lin, MD NASSAU COUNTY MEDICAL CENTER Biochemistry (516) 572-8701 Department of Pathology and Fax (516) 572-5615 Laboratories 2201 Hempstead Turnpike East Meadow, NY 11554 # 4197 Thomas M. Sodeman, MD NORTH SHORE LONG ISLAND DNA (516) 719-1000 JEWISH MEDICAL CENTER Fax (516) 719-1062 LABORATORIES 10 Nevada Drive Lake Success, NY 11042 # 2163 John D. Broome, MD NORTH SHORE UNIVERSITY Biochemistry Alfred E. Slonim, MD HOSPITAL LABORATORY (516) 562-4180 300 Community Drive Fax (516) 562-4591 Manhasset, NY 11030 # 2336 Sylvia Spitzer, PhD SUNY AT STONY BROOK DNA Frederick Miller, MD University Hospital (631) 444-2600 Department of Laboratories Fax (631) 444-2653 L-3 Room 532 Stony Brook, NY 11794-7300 Out of State # 4196 Ronald L. Weiss, MD ASSOCIATED REGIONAL AND DNA (801) 583-2787 UNIVERSITY PATHOLOGISTS Fax (801) 583-2712 500 Chipeta Way # 4118 William K. Seltzer, PhDATHENA DIAGNOSTICS, INC. Biochemistry (508) 756-2886 377 Plantation Street DNA Fax (508) 753-5601 Worcester, MA 01605 # 4584 Benjamin B. Roa, PhD BAYLOR COLLEGE OF MEDICINE DNA (713) 798-6536 Baylor DNA Diagnostic Lab Fax (713) 798-6584 One Baylor Plaza, Room 205D Houston, TX 77030 # 5803 Charles R. Roe, MD BAYLOR UNIVERSITY MEDICAL Biochemistry (214) 820-4533 CENTER DNA Fax (214) 820-4853Institute of Metabolic Disease 3812 Elm Street Dallas, TX 75226 # 4987 Kenneth Friedman, MD THE BLOOD CENTER OF Biochemistry (414) 937-6250 SOUTHEASTERN WISCONSIN, INC. DNA Fax (414) 937-6202 638 North 18th Street Milwaukee, WI 53233 # 4306 Roger V. Lebo, PhD BOSTON UNIVERSITY MEDICAL DNA (617) 638-7083 SCHOOL Fax (617) 638-7092 Center for Human Genetics DNA Diagnostic Laboratory 700 Albany Street, Room 408 Boston, MA 02118 # 4169 Stanton Segal, MD THE CHILDREN'S HOSPITAL OF Biochemistry (215) 590-3376 PHILADELPHIA Fax (215) 590-1998Metabolic Diagnostic Laboratory 34th & Civic Center Boulevard Philadelphia, PA 19104 # 3202 James B. Amberson, MD DIANON SYSTEMS, INC. DNA (203) 381-4000 200 Watson Boulevard Fax (203) 381-4079 Stratford, CT 06615 # 5437 Dorothy Adcock, MD ESOTERIX COAGULATION DNA (303) 399-3336 3177 South Parker Road #300 Fax (303) 399-3338 Aurora, CO 80014 # 4355 Marvin R. Natowicz, MD, PhDEUNICE KENNEDY SHRIVER Biochemistry (781) 642-0175 CENTER Fax (781) 894-2574 Division of Medical Genetics 200 Trapelo Road Waltham, MA 02452-6319 # 4980 Patricia D. Murphy, PhD GENE LOGIC, INC. DNA (800) 436-3564 205 Perry Parkway (Investigational) Fax (240) 631-7422 Gaithersburg, MD 20877 # 4116 David P. Bick, MD GENETICS & IVF INSTITUTE DNA (800) 654-4363 3022 Javier Road Fax (703) 698-2181 Fairfax, VA 22031 # 4165 Bernice A. Allitto, PhD GENZYME GENETICS DNA (508) 872-8400 5 Mountain Road Fax (508) 879-2523 Framingham, MA 01701 # 3349 Allen N. Lamb, PhD GENZYME GENETICS Biochemistry (505) 438-1111 2000 Vivigen Way Fax (505) 438-1120 Santa Fe, NM 87505 # 5445 Franklin A. Bontempo, MD ITxM DIAGNOSTICS, INC. DNA (412) 209-7347 Molecular Diagnostics Reference Fax (412) 209-7325 Laboratory 3636 Boulevard of the Allies Pittsburgh, PA 15213 # 4253 Gary R. Cutting, MD JOHNS HOPKINS HOSPITAL DNA (410) 955-0483 DNA Diagnostic Laboratory Fax (410) 955-0484 600 North Wolfe Street CMSC 10-106 Baltimore, MD 21287 # 7167 Constance A. Griffin, MD JOHNS HOPKINS HOSPITAL DNA (410) 614-7484 Medical Laboratories Fax (410) 614-7475 600 North Wolf Street Nelson B-112 Baltimore, MD 21287-8012 # 7422 Annette K. Taylor, PhD KIMBALL GENETICS, INC. DNA (303) 320-1807 101 University Boulevard Fax (303) 388-9220 Suite 350 Denver, CO 80206 # 4180 Myla P. Lai-Goldman, MDLABORATORY CORPORATION OF Biochemistry (800) 533-0567 AMERICA HOLDINGS DNA Fax (919) 361-7797 1912 Alexander Drive Research Triangle Park, NC 27709 # 3263 Lester E. Wold, MD MAYO COLLABORATIVE SERVICES Biochemistry (507) 284-5357 INC. DNA Fax (507) 284-1927 Hilton Building 530 200 1st Street SW Rochester, MN 55905 # 5414 Brian E. Ward, PhD MYRIAD GENETIC LABORATORIES DNA (801) 584-1100 320 Wakara Way (Investigational) Fax (801) 584-1190 Salt Lake City, UT 84108 # 4733 Edwin W. Naylor, PhD NEO GEN SCREENING LP Biochemistry (412) 341-8658 1100 Roessler Road, Suite 200D Fax (412) 341-8926 Pittsburgh, PA 15220 # 5805 Robert M. Nakamura, MDPROMETHEUS LABORATORIES, INC. DNA (619) 824-0895 5739 Pacific Center Boulevard Fax (619) 824-0896 San Diego, CA 92121 # 2478 Jerald C. Nelson, MD QUEST DIAGNOSTICS, INC. Biochemistry (949) 728-4000 33608 Ortega Highway DNA Fax (949) 728-4860 San Juan Capistrano, CA 92690 # 2499 William E. Tarr, Jr., MD QUEST DIAGNOSTICS, INC. Biochemistry (201) 393-5000 One Malcolm Avenue Fax (201) 462-4331 Teterboro, NJ 07608 # 5451 James D. Shoemaker, MD, PhDST. LOUIS UNIVERSITY Biochemistry (314) 577-8169 Metabolic Screening Laboratory Fax (314) 577-8156 1402 South Grand St. Louis, MO 63104 # 3142 David J. Bylund, MDSCRIPPS REFERENCE LABORATORY DNA (858) 784-7800 11107 Roselle Street – Suite A Fax (858) 453-6172 San Diego, CA 92121 # 4121 Jerzy Tomczak, DVM THOMAS JEFFERSON UNIVERSITY Biochemistry (215) 955-8320 Tay-Sachs Prevention Program Fax (215) 955-99901100 Walnut Street, MOB Rm 400 Philadelphia, PA 19107 # 5479 Mary-Claire King, PhD UNIVERSITY OF WASHINGTON DNA (206) 616-4294 King Laboratory (Investigational) Fax (206) 616-4295 1959 Pacific Street NE K160 Health Sciences Center Seattle, WA 98195-7720 # 7307 Alan H. Wells, MD UPMC PRESBYTERIAN Biochemistry (412) 647-7813 Central Laboratory Services Fax (412) 647-5434200 Lothrop Street, Rm 5929 MT Pittsburgh, PA 15213-2582 Outside the USA # 7452 Gillian Rysiecki, PhD CELLMARK DIAGNOSTICS DNA Allen D. Swift, PhD 8 Blacklands Way (441) 235-3350 Abingdon, UK OX14-1DY Fax (441) 235-5288 NEW YORK STATE PERMITTED FETAL DEFECT MARKER LABORATORIES July 1, 2000 - June 30, 2001 Fetal Defect Marker laboratories are certified to perform quantitative measurement of biomarkers in sera and/or amniotic fluid from pregnant women to assess the prenatal risk for fetal defects associated with morphological and genetic disorders. These disorders include neural tube defects, such as spina bifida and encephalocele; ventral wall defects, such as omphalocele and gastroschisis; and chromosomal abmormalities, such as trisomy 21 Down syndrome and trisomy 18 Edward syndrome. The biochemical markers measured by Fetal Defect Marker laboratories include, but are not limited to, alpha-fetoprotein (AFP), human chorionic gonadotropin (hCG), unconjugated estriol (uE3), pregnancy-associated plasma protein A (PAPP-A), and inhibin-A. Fetal Defect Marker laboratories evaluate the changes in these biochemicals during pregnancy in the context of a priori risks based on factors such as the woman's age, race and gestational date in order to provide the clinician and patient with a risk assessment for specific abnormalities. The laboratory report provides the clinician and patient with a risk assessment for specific abnormalities and a basis to discuss further actions. Use the accompanying tables as a guideline to the approved services provided by a laboratory. The current status of a laboratory's clinical license should be checked with the appropriate Wadsworth Center program or on the Wadsworth Center's web page at www.wadsworth.org/labcert/ clep/links_for_FEDM.html. Fetal Defect Marker Quality Assurance Program Gerald J. Mizejewski, PhD (518) 486-5900 Clinical Laboratory Evaluation Program Deirdre Astin (518) 485-5378 GENES Directory 2001 Approved Testing Services Provided by Laboratories Holding Permist in the Fetal Defect Markers Category Lab PFI Number Prenatal AFP Screening for Neural Tube Defects Maternal Serum Multiple Marker Screening for Chromosome Aneuploides Test Offered Risk Assessment Markers in Screening Profile: AFP plus... Maternal Serum Amniotic Fluid Trisomy 21 Trisomy 18 Total hCG hCG Free hCG hCG uE3 PAPP-A Inhibin-A 1067 1899 2006 2093 2220 2299 2336 2477 2478 2499 2510 3173 3197 3202 3263 3349 3516 3584 3651 3654 3745 4116 4180 4191 4196 5174 5310 5453 7471 HSA 1 # 2006 Philip Li, PhD CHILDREN'S HOSPITAL OF BUFFALO (716) 878-7474 Clinical Laboratories 219 Bryant Street Buffalo, NY 14222 HSA 2 # 2093 Dean A. Arvan, MD UNIVERSITY OF ROCHESTER/ (716) 275-3883 STRONG MEMORIAL HOSPITAL Clinical Laboratory 601 Elmwood Avenue, Box 608 Rochester, NY 14642 HSA 3 # 2220 Gregory Threatte, MDSUNY UPSTATE MEDICAL UNIVERSITY (315) 464-4460 Clinial Pathology Laboratory 750 East Adams Street Syracuse, NY 13210 HSA 5 # 1899 Herbert Jacobson, PhD ALBANY MEDICAL CENTER (518) 262-5001 Hospital Chemistry and Immunology Laboratory 47 New Scotland Avenue - A75 Albany, NY 12208 # 2299 John M. Donhowe, MDBELLEVUE MATERNITY HOSPITAL, INC. (518) 346-9492 Clinical Laboratory 2210 Troy Road Niskayuna, NY 12309 # 1067 Gerald J. Mizejewski,NEW YORK STATE DEPARTMENT OF HEALTH PhD Fetal Defect Marker Laboratory (518) 486-5900 Wadsworth Center Empire State Plaza, P.O. Box 509 Albany, NY 12201-0509 HSA 7/Bronx # 4191 Harold M. Nitowsky, MD MONTEFIORE MEDICAL CENTER (718) 405-8100 Reproductive Genetics Laboratory 1635 Poplar Street Bronx, NY 10461 HSA 7/Manhattan # 5174 Lawrence Kaplan, PhD BELLEVUE HOSPITAL (212) 562-3411 Pathology Laboratory 27th and First Avenue New York, NY 10016 # 3516 Robert J. Desnick, PhD, MDTHE MOUNT SINAI MEDICAL CENTER (212) 241-6943 Genetic Testing Laboratory One Gustave L. Levy Place, Box 1497 New York, NY 10029-6574 # 3651 M. Desmond Burke, MD THE NEW YORK HOSPITAL (212) 746-2041 525 East 68th Street, Room F-715 New York, NY 10021 # 5310 Michael Pesce, PhD NEW YORK PRESBYTERIAN HOSPITAL (212) 305-2205 Clinical Laboratory Services 622 West 168th Street New York, NY 10032 HSA 8 #5453 Linda Bradley, PhD CLINIGENE MEDICAL SPECIALTY (800) 299-3819 LABORATORY 240 Motor Parkway Hauppauge, NY 11788 # 3173 James N. Macri, PhD NTD LABORATORIES, INC. (631) 425-0800 403 Oakwood Road Huntington Station, NY 11746-7207 # 2336 Jay Bock, MD, PhD SUNY AT STONY BROOK (631) 444-2600 University Hospital Department of Laboratories L3, Room 532 Stony Brook, NY 11794-7300 Out of State # 3654 Jin-Chen Wang, MD ALFIGEN, INC. (818) 356-3400 11 West Del Mar Boulevard Pasedena, CA 91105 # 3745 Ira D. Godwin, MDAMERICAN MEDICAL LABORATORIES, INC. (703) 802-6900 14225 Newbrook Drive, Box 10841 Chantilly, VA 20153-0841 # 4196 Edward Ashwood, MDASSOCIATED REGIONAL AND UNIVERSITY (801) 583-2787 PATHOLOGISTS, INC. 500 Chipeta Way Salt Lake City, UT 84108 # 3202 Steven Gersen, PhD DIANON SYSTEMS, INC. (203) 381-4000 200 Watson Boulevard Stratford, CT 06615 # 3584 Mary Tang, MD FLETCHER ALLEN HEALTH CARE (802) 656-3560 MCHV Campus 111 Colchester Avenue Burlington, VT 05401-1435 # 4116 Joseph D. Schulman, MD GENETICS & IVF INSTITUTE (800) 654-4363 3020 Javier Road Fairfax, VA 22031 # 3349 Stirling Puck, MD GENZYME GENETICS (505) 438-1111 2000 Vivigen Way Santa Fe, NM 87505 # 4180 Myla P. Lai-Goldman, MD LABORATORY CORPORATION OF (800) 533-0567 AMERICA HOLDINGS 1912 Alexander Drive Research Triangle Park, NC 27709 # 3263 George Klee, MD, PhDMAYO COLLABORATIVE SERVICES, INC. (507) 284-5357 Hilton Building, 530 200 First Street SW Rochester, MN 55905 # 2510 Stephen Lobel, PhD QUEST DIAGNOSTICS, INC (610) 631-4200 400 Egypt Road Norristown, PA 19403 #2477 JoAnn Kelly, PhD QUEST DIAGNOSTICS, INC. (818) 989-2520 7600 Tyrone Avenue Van Nuys, CA 91405 # 2499 Joseph E. O'Brien, MD QUEST DIAGNOSTICS, INC. (201) 393-5000 1 Malcolm Avenue Teterboro, NJ 07608 # 2478 Jo Ellen Lee, PhD QUEST DIAGNOSTICS, INC. (714) 728-4000 33608 Ortega Highway San Juan Capistrano, CA 92690-6130 # 3197 Thomas England, PhD SPECIALTY LABORATORIES, INC. (800) 421-7110 2211 Michigan Avenue Santa Monica, CA 90404-3900 # 7471 Jacob Canick, PhD WOMEN AND INFANTS HOSPITAL (401) 276-7882Division of Prenatal/Special Testing 70 Elm Streeet, 2nd Floor Providence, RI 02903 CANCER GENETICS UNITS This section presents information on those units which provide genetic services primarily to those people with risks of concerns about cancers. These genetic service units may or may not appear in either Section C or D. ROSWELL PARK CANCER INSTITUTE HSA: 1 Address: Roswell Park Cancer Institute Division of Surgery Elm & Carlton Streets Buffalo, NY 14263 Telephone: (716) 845-8400 Fax: (716) 845-5720 Staff: Director: Carolyn D. Farrell, MS, CNP Specialty Clinics: Breast Cancer Risk Evaluation Program Clinical Genetics Familial Adenomatous Polyposis (FAP) Hereditary Non- Polyposis Colon Cancer (HNPCC) Satellite Clinics: Research Interests: Breast cancer Stephen Edge, MD (716) 845-5789 Familial non-site specific cancer Garth Anderson, PhD Ms. Farrell, MS (716) 845-8400 FAP/HNPCC/Polyposis of Colon (sporadic) Miguel Rodriguez- Bigas, MD (716) 845-5815 Ovarian Cancer M. Stephen Piver, MD (800) OVARIAN www.ovariancancer. com Howard J. Allen, PhD, MSW (716) 845- 5725,5784 Fax: (716) 845- 3457 Richard A. DiCioccio, PhD (716) 845-8059 Pancreatic Cancer Lawrence Leichman, MD (716) 845-3499 Thyroid cancer Thom Loree, MD AnneMarie Block, PhD Special Hours: On an individual basis Special Languages: Spanish Resource persons within the institute Special Resources: The Gilda Radner Familial Ovarian Cancer Registry: Family and Medical History and Biosample Resource Program. National High Risk Registry/for women with family histories of breast cancer UNIVERSITY OF ROCHESTER SCHOOL OF MEDICINE HSA/Borough: 2 Address: University of Rochester School of Medicine Division of Genetics 601 Elmwood Avenue Rochester, NY 14642 Telephone: (716) 275-0169 Fax: (716) 273-1034 Staff: Director: Peter T. Rowley, MD Program Coordinator; Genetic Counselor: Starlene Loader, RN, BSN Specialty Clinics: Breast Cancer Clinic Satellite Clinics: Research Interests: Breast Cancer: BRCA1, BRCA2 mutations Hereditary Nonpolyposis Colon Cancer Special Hours: Special Languages: Special Resources: SUNY UPSTATE MEDICAL CENTER HSA/Borough: 3 Address: SUNY Upstate Medical Center 750 East Adams Street Syracuse, NY 13210 Telephone: (315) 464-7610 Fax: (315) 464-6329 Staff: Director, Division of Genetics: Joe J. Hoo, MD Genetic Counselor: Bonnie Braddock, MPH, CGC Specialty Clinics: High Risk Breast Clinic Satellite Clinics: Watertown, NY Research Interests: Special Hours: Special Languages: Special Resources: BELLEVUE WOMAN'S HEALTH CARE PLUS HSA/Borough: 5 Address: Bellevue Woman's Health Care Plus Hereditary Cancer Screening PRogram 2093 Western Avenue Guilderland, NY 12084 Telephone: (518) 346-9528 Fax: (518) 439-0629 (confidential line) Staff: Director: Patricia D. Murphy, PhD Genetic Counselor: Bonnie Liebers, MS, CGC Specialty Clinics: Satellite Clinics: Appointments may be available at local physician's offices upon request. Research Interests: Inpact of modifying genes on hereditary breast, ovarian and colon cancers Special Hours: Special Languages: Special Resources: Mammography available on-site. WHITE PLAINS HOSPITAL HSA: 6 Address: White Plains Hospital Dickstein Cancer Treatment Center Cancer Genetics Program 2-4 Longview Avenue White Plains, NY 10605-1122 Telephone: (914) 681-2873 Fax: (914) 681-2799 Staff: Program Director: Robert D. Burke, MD Genetic Counselor: Rochelle Vininsky, MS, CGC Administrator: Kathy Duffy, RN Specialty Clinics: Cancer Genetics Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: ALBERT EINSTEIN COLLEGE OF MEDICINE HSA/Borough: 7/Bronx Address: Albert Einstein College of Medicine Family Cancer Risk Assessment Ullmann 515 Bronx, NY 10461 Telephone: (718) 430-3739 Fax: (718) 430-8975 Staff: Program Director: Robert D. Burke, MD Genetic Counselor: Rochelle Vininsky, MS, CGC Specialty Clinics: Cancer Genetics Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: BETH ISRAEL MEDICAL CENTER HSA/Borough: 7/Manhattan Address: Beth Israel Medical Center Family Risk Program 10 Union Square East, 4A New York, NY 10003 Telephone: (212) 844-8955 Fax: (212) 844-8954 Staff: Director: Bert M. Petersen, Jr., MD Coordinator and Genetic Counselor: Mary Kay Dabney, MS, CGC Specialty Clinics: Cancer Genetics Satellite Clinics: Research Interests: Genetics of breast and ovarian cancer in women of African ancestry Special Hours: Special Languages: Interpretors provided Special Resources: MEMORIAL HOSPITAL- SLOAN KETTERING CANCER CENTER HSA/Borough: 7/Manhattan Address: Memorial Hospital- Sloan Kettering Cancer Center 1275 York Avenue New York, NY 10021 Telephone: (212) 639-6402 Fax: (212) 717-3571 Staff: Chief, Clinical Genetics Service: Kenneth Offit, MD, MPH Faculty: Mark Robson, MD Genetic Counselors: Robin Baum, MS Emily Glogowski, MS Judith Hull, MS Heather Pierce, PhD, MS Lauren Scheuer, MS Beth Siegel, MS Director, Gene Transfer and Somatic Cell Engineering Facility: Michel Sadelain, MD, PhD Specialty Clinics: Cancer risk counseling for individuals at hereditary risk for breast, ovarian, colon, prostate and endocrine cancers, as well as melanoma and selected pediatric malignancies. Satellite Clinics: Research Interests: Aberrant transcription in leukemogenesis Cancer susceptibilities in Ashkenazi Jews Gene transfer and gene expression Hereditary risks for non-Hodgkins lymphoma Impact of BRCA1-based risk counseling for hereditary breast/ovarian cancer Impact on African-American women at risk for breast cancer Special Hours: Special Languages: Translators available for most languages Special Resources: Colon cancer prevention program Prostate diagnosis center Special surveillance breast program Sulindac trial Tamoxifen trial Other chemoprevention trials ST. LUKE'S-ROOSEVELT HOSPITAL CENTER HSA/Borough: 7/Manhattan Address: St. Luke's- Roosevelt Hospital Center Family Risk Program 425 West 59th Street, 7A New York, NY 10019 Telephone: (212) 523-7092 Fax: (212) 523-7490 Staff: Director: Bert M. Petersen, Jr., MD Coordinator and Genetic Counselor: Mary Kay Dabney, MS, CGC Specialty Clinics: Cancer Genetics Satellite Clinics: Research Interests: Genetics of breast and ovarian cancer in women of African ancestry Special Hours: Special Languages: Interpretors provided Special Resources: STRANG CANCER PREVENTION CENTER HSA/Borough: 7/Manhattan Address: Strang Cancer Prevention Center 428 East 72nd Street New York, NY 10021 Telephone: (212) 794-4900, ext. 111/120 Fax: (212) 746-8893 Staff: Director: Fred Gilbert, MD Genetic Counselors: Gladys Rosenthal, MS Clinical Psychologist: Kathryn Kash, PhD Specialty Clinics: Strang breast surveillance program for women with family history of breast cancer Hereditary colon cancer program Satellite Clinics: Lenox Hill Hospital New York Hospital/Cornell Medical Center Research Interests: Predictive testing for inherited cancers Special Hours: Special Languages: Special Resources: National high risk registry for women with family histories of breast cancer STATEN ISLAND UNIVERSITY HOSPITAL HSA/Borough: 7/Staten Island Address: Staten Island University Hospital Nalitt Cancer Institute 256 Mason Avenue Staten Island, NY 10305 Telephone: (718) 226-6181 Fax: (718) 226-6467 Staff: Genetic Counselor: Janice Berliner, MS, CGC Specialty Clinics: Cancer genetics and risk assessment Heriditary Hemochromatosis Clinic Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: NORTH SHORE LONG ISLAND JEWISH MEDICAL CENTER HSA/Borough: 7/Queens Address: North Shore Long Island Jewish Medical Center Schneider Children's Hospital Room CH009 276-01 76th Avenue New Hyde Park, NY 11040 Telephone: (718) 470-3009 Fax: (718) 347-2814 Staff: Genetic Counselor: Donna Blumenthal, MS Specialty Clinics: Satellite Clinics: Research Interests: Special Hours: Special Languages: Special Resources: NORTH SHORE UNIVERSITY HOSPITAL HSA/Borough: 8 Address: North Shore University Hospital Don Monti Division of Medical Oncology 1554 Northern Boulevard, Suite 204 Manhasset, NY 11030 Telephone: (516) 365-3996 ext. 2813 Fax: (516) 365-4597 Staff: Medical Geneticists: Martin Bialer, MD, PhD Lakshimi Mehta, MD Genetic Counselor: Yelena Kemel, MS Specialty Clinics: Satellite Clinics: Wyckoff Hospital, Brooklyn Huntington Hospital, Huntington Research Interests: Special Hours: Special Languages: Hindi Russian Special Resources: CYSTIC FIBROSIS CENTERS HSA Director/Telephone Center Name and Address 1 Drucy Borowitz, MD CHILDREN'S HOSPITAL OF BUFFALO (716) 878-7561 Children's Lung and Cystic Fax: (716) 888-3945 Fibrosis Center Colin McMahan, MD 219 Bryant Street Adult Cystic Fibrosis Program Buffalo, NY 14222 2 Karen Z. Voter, MD UNIVERSITY OF ROCHESTER (716) 275-2464 STRONG MEMORIAL HOSPITAL Fax: (716) 275-8706 Cystic Fibrosis Center 601 Elmwood Avenue, Box 667 Rochester, NY 14642 3 Ronald Perciaccante, MD HOUSE OF GOOD SAMARITAN (315) 788-2211 Child and Adolescent Health Fax: (315) 788-0956 Associates 513 Washington Street Watertown, NY 13601 Ran Anbar, MD SUNY UPSTATE MEDICAL UNIVERSITY Debra Iannuzzi, MD Robert C. Schwartz Cystic James F. Sexton, MD (adults) Fibrosis Center (315) 464-6323 750 East Adams Street, Room 5415 Fax: (315) 464-6322 Syracuse, NY 13210 5 Robert A. Kaslovsky, MD ALBANY MEDICAL CENTER Jonathan M. Rosen, MD (adults) The Children's Hospital (518) 262-6880 Pediatric Pulmonary and Fax: (518) 262-6884 Cystic Fibrosis Center 47 New Scotland Avenue, Mail Code 112 Albany, NY 12208 HSA Director/Telephone Center Name and Address 6 Allen Dozor, MD WESTCHESTER COUNTY MEDICAL (914) 493-7585 CENTER Fax: (914) 594-4336 Armand V. Mascia Cystic Fibrosis Center New York Medical College Valhalla, NY 10595 7 Robert Giusti, MD LONG ISLAND COLLEGE HOSPITAL Brooklyn (718) 780-1025 Cystic Fibrosis Center (718) 780-2989340 Henry Street Brooklyn, NY 11201 7 Lynne Quittel, MD COLUMBIA-PRESBYTERIAN MEDICAL Manhattan Emily DiMango, MD (adult) CENTER (212) 305-5122Cystic Fibrosis Center Fax: (212) 305-6103 630 West 168th Street (BHS-7S) New York, NY 10032 Meyer Kattan, MDMOUNT SINAI MEDICAL CENTER Richard J. Bonforte, MD Cystic Fibrosis and (212) 241-7788Pediatric Pulmonary Center Fax: (212) 876-3255 One Gustave L. Levy Place New York, NY 10029 Maria Berdella, MD SAINT VINCENT CATHOLIC (212) 304-8898/5MEDICAL CENTERS OF Patricia Walker, MD NEW YORK Elinor Langfelder Schwind, MS Cystic Fibrosis Center Genetic CounselorO'Toole Building, Suite 509 (212) 604-889636 Seventh Avenue Fax: (212) 604-3899 New York, NY 10011 8 Jack Gorvoy, MD NORTH SHORE LONG ISLAND Joan K. DeCelie-Germana, MD JEWISH MEDICAL CENTER (718) 470-3305Schneider Children's Hospital Fax: (718) 343-3578 Cystic Fibrosis Center New Hyde Park, NY 11040 Clement L. Ren, MD SUNY AT STONY BROOK (516) 444-3091Cystic Fibrosis Service (516) 444-2700Department of Pediatrics Fax: (516) 444-6045 Stony Brook, NY 11794-8111 HSA Director/Telephone Center Name and Address Puerto Rico José Rafael Rodriguez CENTRO CARDIOVASCULAR DE Santana, MD PUERTO RICO Y DEL CARIBE (787) 754-8500 Programma Pediátricá Pulmonar ext. 1080, 1056, 1055 GPO Box 366528 Fax (787) 767-8500 ext. 1215 San Juan, PR 00936-6528 Web: www.pedasthma.com E-mail: ppp@pedasthma.com GAUCHER DISEASE TREATMENT CENTERS HSA Director/Telephone Center Name and Address 1 Martin Brecher, MD CHILDREN'S HOSPITAL OF BUFFALO (716) 878-7349 Pediatric Hematology/Oncology Fax: (716) 888-3801 219 Bryant Street Buffalo, NY 14222 3 Jonathan Wright, MD SUNY UPSTATE MEDICAL UNIVERSITY (315) 464-8200 Regional Oncology Center (315) 464-4353 CWB Room 311-H Appt. desk: (315) 464-8238 750 East Adams Street Fax: (315) 464-8206 Syracuse, NY 13210 5 Harry Dunn, MD ALBANY MEDICAL CENTER Linda B. LaBier, RN Division of Hematology, A-52 Program Developer/Coordinator 47 New Scotland Avenue (518) 262-5995 Albany, NY 12208-3479 Fax: (518) 262-6320 7 Mikhail Grinberg, MD MAIMONIDES MEDICAL CENTER Brooklyn (718) 283-6900 Hematology/Oncology Associates Fax: (718) 283-6930 953 49th Street Brooklyn, NY 11279 7 Nathaniel Wisch, MD LENOX HILL HOSPITAL Manhattan (212) 861-6660 Department of Hematology/Oncology Fax: (718) 744-4696 12 East 86th Street New York, NY 10028 HSA Director/Telephone Center Name and Address Gregory Pastores, MD MOUNT SINAI MEDICAL CENTER Robert Desnick, MD, PhD Department of Human Genetics (212) 241-6944Center for Jewish Genetic Fax: (212) 360-1809 Diseases One Gustave L. Levy Place New York, NY 10029-6574 8 Arthur Sawitsky, MD NORTH SHORE LONG ISLAND JEWISH (718) 470-8930 MEDICAL CENTER Fax: (718) 470-0169 Institute of Oncology 2nd Floor 269-11 76th Avenue New Hyde Park, NY 11040 Steven L. Allen, MD NORTH SHORE UNIVERSITY (516) 562-8959 HOSPITAL Fax: (516) 562-8950 Division of Hematology/ Oncology 300 Community Drive Manhasset, NY 11030 Robert Parker, MDSUNY AT STONY BROOK (631) 444-7720University Medical Center Fax: (631) 444-7865 Department of Pediatrics HSC, T-11, 029 Stony Brook, NY 11794-8111 HEMOPHILIA TREATMENT CENTERS HSA Director/Telephone Center Name and Address 1 Zale P. Bernstein, MD HEMOPHILIA CENTER OF WESTERN (716) 896-2470 NEW YORK, INC. (716) 898-5604 462 Girder Street Fax: (716) 896-3119 Buffalo, NY 14215 2 Peter Kouides, MD MARY M. GOOLEY HEMOCENTER, INC. (716) 544-3630 1425 Portland Avenue Fax: (716) 338-2347 Rochester, NY 14621 3 Thomas Coyle, MD SUNY UPSTATE MEDICAL CENTER (315) 464-8200 (Adults) 750 East Adams Street Fax: (315) 464-8206 Syracuse, NY 13210 Gloria Kennedy, MD (315) 464-5294 (Pediatrics) Fax: (315) 464-7238 4 William MacLaughlin, MD UNITED HEALTH SERVICES - (607) 763-6436 WILSON MEMORIAL HOSPITAL Office: (607) 763-6384 Blood Disorder Center Fax: (607) 763-5514 33-57 Harrison Street Johnson City, NY 13790 5 Peter Burkart, MD ALBANY MEDICAL CENTER (518) 262-5827 Regional Comprehensive After hours: (518) 262-3111Hemophilia and Von Willebrand Fax: (518) 262-6320 Treatment Center, MSX-43 47 New Scotland Avenue Albany, NY 12208 7 Swayam Sadanadan, MD THE BROOKLYN HOSPITAL CENTER Brooklyn (718) 250-6074 121 DeKalb Avenue Fax: (718) 250-6518 Brooklyn, NY 11201 HSA Director/Telephone Center Name and Address 7 Sergio Piomelli, MD COLUMBIA-PRESBYTERIAN HOSPITAL Manhattan (212) 305-5808 Division of Pediatric After hours: (212) 305-2466 Hematology-Oncology Fax: (212) 305-5848 622 West 168th Street New York, NY 10032 Stephanie Seremetis, MD MOUNT SINAI MEDICAL CENTER (212) 876-8701Comprehensive Hemophilia Fax: (212) 722-6079 Diagnostic and Treatment Center Annenberg #23-92 99th Street and Madison Avenue New York, NY 10029 Donna DiMichele, MD THE NEW YORK PRESBYTERIAN (212) 746-3418 HOSPITAL-CORNELL MEDICAL Fax: (212) 746-8986 CENTER Regional Hemophilia Treatment Center Payson 695 525 East 68th Street New York, NY 10021 Margaret Karpatkin, MD NEW YORK UNIVERSITY MEDICAL (212) 263-6428 CENTER Fax: (212) 263-8099 550 First Avenue New York, NY 10016 7 Raul Manrique, MD CITY HOSPITAL AT ELMHURST Queens (718) 334-2398 79-01 Broadway Fax: (718) 334-5610 Elmhurst, NY 11373 Richard A. Lipton, MD NORTH SHORE LONG ISLAND (718) 470-7500 JEWISH MEDICAL CENTER Fax: (718) 347-8903 Hemophilia Treatment Center Institute of Oncology Room 210 270-05 76th Avenue New Hyde Park, NY 11040 8 Dominick Sabatino, MD NASSAU COUNTY MEDICAL CENTER (516) 572-6177Division of Pediatric Fax: (516) 572-5798 Hematology-Oncology East Meadow, NY 11554 HSA Director/Telephone Center Name and Address Joseph A. Kochen, MD NORTH SHORE UNIVERSITY HOSPITAL (516) 562-4634 Division of Pediatric Hematology Fax: (516) 562-4747 300 Community Drive Manhasset, NY 11030 Mae B. Hultin, MD SUNY AT STONY BROOK (516) 444-2059 (adults) Division of Hematology Fax: (516) 444-7530 Stony Brook, NY 11794-8151 Robert Parker, MD Department of Pediatrics (516) 444-7720 (pediatrics)Stony Brook, NY 11794-8111 Fax: (516) 444-7865 Puerto Rico Enrique Vélez García, MD UNIVERSIDAD DE PUERTO RICO (787) 754-3894/3895/3898 Recinto de Ciencias Médicas Pedro J. Santiago-Borrero, MD Hospital Universitario (787) 754-7410/753-6340Sección de Hematología-Oncología Programa de Enfermedades Hereditarias de Puerto Rico P.O. Box 365067 San Juan, PR 00936-5067 HYPOTHYROIDISM TREATMENT CENTERS HSA Director/Telephone Center Name and Address 1 Margaret MacGillivray, MDCHILDREN'S HOSPITAL OF BUFFALO (716) 878-7588 Division of Endocrinology/Diabetes Fax: (716) 888-3827 219 Bryant Street Buffalo, NY 14222 2 Craig Orlowski, MD UNIVERSITY OF ROCHESTER (716) 275-7744 STRONG MEMORIAL HOSPITAL Fax: (716) 244-6097Department of Pediatrics/Endocrinology 601 Elmwood Avenue, Box 777 Rochester, NY 14642 3 Robert Richman, MD SUNY UPSTATE MEDICAL UNIVERSITY (315) 464-7561 Pediatric Endocrinology Fax: (315) 464-6065 750 East Adams Street Syracuse, NY 13210 5 Linda Riddick, MD ALBANY MEDICAL CENTER (518) 262-5723 Pediatric Endocrinology Fax: (518) 262-4974 47 New Scotland Avenue, A-88 Albany, NY 12208 6 Richard Noto, MD WESTCHESTER COUNTY MEDICAL CENTER (914) 493-7584 Department of Endocrinology Fax: (914) 594-4857 Munger Pavilion - 103 Valhalla, NY 10595 7 Joan DiMartino-Nardi, MD MONTEFIORE MEDICAL CENTER Bronx (718) 920-4664 Division of Pediatric Endocrinology Fax: (718) 405-5609111 East 210th Street, Maillist 2A Bronx, NY 10467 HSA Director/Telephone Center Name and Address Yolaine St. Louis, MD BRONX-LEBANON HOSPITAL (718) 960-10481650 Grand Concourse Fax: (718) 960-1384 Bronx, NY 10456 7 Theodore W. AvRuskin, MD BROOKDALE HOSPITAL Brooklyn Naveen Uli, MD (Pediatrics) MEDICAL CENTER (718) 240-5233Linden Boulevard at Brookdale Fax: (718) 240-6515 Plaza Brooklyn, NY 11212 Henry Anhalt, DOMAIMONIDES MEDICAL CENTER (718) 283-82604801 Tenth Avenue Fax: (718) 283-6268 Brooklyn, NY 11219 William Bastan, MD SUNY DOWNSTATE MEDICAL CENTER Salvador Castells, MD 455 Lenox Road, Box 49 (718) 270-1907 Brooklyn, NY 11203 Fax: (718) 270-1985 7 Fanella Grieg, MD MOUNT SINAI MEDICAL CENTER Manhattan (212) 241-6936 1200 Fifth Avenue Fax: (212) 876-4395 New York, NY 10029 Raphael David, MDNEW YORK UNIVERSITY MEDICAL Bonita Franklin, MD (pediatrics) CENTER Brenda Kohn, MD550 First Avenue (212) 263-6462New York, NY 10016 Fax: (212) 562-3273 Gabriel Nigrin, MD SAINT VINCENT CATHOLIC MEDICAL (212) 604-7881 CENTERS OF NEW YORK Fax: (212) 604-2254 Department of Pediatrics 130 West 12th Street New York, NY 10011 7 Richard Noto, MD SAINT VINCENT CATHOLIC MEDICAL Staten Island (718) 876-4636 CENTERS OF NEW YORK Fax: (718) 876-2739 355 Bard Avenue Staten Island, NY 10310 7 Dennis Carey, MD NORTH SHORE LONG ISLAND Queens Graeme Frank, MD JEWISH MEDICAL CENTER (718) 470-3290Schneider Children's Hospital Fax: (718) 470-9173 271-16 76th Avenue New Hyde Park, NY 11040 HSA Director/Telephone Center Name and Address 8 Denise Blumberg, MD NASSAU COUNTY MEDICAL CENTER (516) 572-6398 Pediatric Endocrinology Fax: (516) 572-5718 2201 Hempstead Turnpike Box 74 East Meadow, NY 11554 Pavel Fort, MD NORTH SHORE UNIVERSITY Phyllis Speiser, MD HOSPITAL (516) 562-4635 300 Community Drive Fax: (516) 562-4635 Manhasset, NY 11030 Thomas A. Wilson, MD SUNY AT STONY BROOK (631) 444-2585 University Hospital and Medical Fax: (631) 444-6045 Center Health Sciences Center, T-11, 808 Stony Brook, NY 11794-8111 J. Alilio Careas, MD WINTHROP UNIVERSITY HOSPITAL (516) 663-3090 239 First Street Fax: (516) 663-3070 Mineola, NY 11501 INHERITED METABOLIC DISEASE TREATMENT CENTERS Inherited metabolic disease treatment centers are health care facilities established under Article 28 of the Public Health Law, approved by the New York State Department of Health and certified by the Wadsworth Center to provide diagnosis, treatment and other medical and social services to children identified by the Newborn Screening Program. The centers throughout New York State maintain life- long contact with identified patients, monitoring and adjusting treatment therapies throughout their growth and development. The centers also provide necessary education and genetic counseling to affected families. HSA Director/Telephone Center Name and Address 1 Richard W. Erbe, MD CHILDREN'S HOSPITAL OF BUFFALO (716) 878-7411 Inherited Metabolic Disease Fax: (716) 878-1351 Treatment Center Robert E. Warner Rehabilitation Center 936 Delaware Avenue Buffalo, NY 14209 2 Georgianne Arnold, MD UNIVERSITY OF ROCHESTER (716) 275-5857 STRONG MEMORIAL HOSPITAL Fax: (716) 273-1018 Pediatric Genetics 601 Elmwood Avenue, Box 777 Rochester, NY 14642 HSA Director/Telephone Center Name and Address 5 Linda Riddick, MD ALBANY MEDICAL CENTER (518) 262-5723Inherited Metabolic Disease Fax: (518) 262-4974 Treatment Center 47 New Scotland Avenue Albany, NY 12208 6 David Kronn, MD WESTCHESTER COUNTY MEDICAL Linda Ross, PNP CENTER Linda Stern, CSWWestchester Institute for (914) 493-8389Human Development Fax: (914) 493-1973 Children's Center Metabolic Program Valhalla, NY 10595 7 Claude Sansaricq, MD, PhD MOUNT SINAI MEDICAL CENTER Manhattan Selma E. Snyderman, MD Inherited Metabolic Disease (212) 241-8544Treatment Center, Box 1497 (212) 241-69471 Gustave Levy Place Fax: (212) 860-3316 New York, NY 10029-6574 8 Alfred E. Slonim, MD NORTH SHORE UNIVERSITY (516) 869-3390 HOSPITAL Fax: (516) 869-3394 Inherited Metabolic Disease Treatment Center 1165 Northern Boulevard Manhasset, NY 11030 Patricia Galvin-Parton, MD SUNY AT STONY BROOK (631) 444-8211Inherited Metabolic Disease (631) 444-7723Treatment Center Fax: (631) 444-7865 HSC, T11, 040 Stony Brook, NY 11794-8111 MUSCULAR DYSTROPHY TREATMENT CENTERS HSA Director/Telephone Center Name and Address 1 Carolyn Warner, MD ERIE COUNTY MEDICAL CENTER/ (716) 898-4893 CHILDREN'S HOSPITAL OF BUFFALO MDA Neuromuscular Diseases Clinic 462 Grider Street Buffalo, NY 14215 2 Charles A. Thornton, MD UNIVERSITY OF ROCHESTER (716) 275-2542 STRONG MEMORIAL HOSPITAL Rabi Tawil, MD 601 Elmwood Avenue, Box 673 (716) 275-6372 Rochester, NY 14616 Fax: 3 David O. VanEenenam, MD GENESIS HEALTH CENTER (315) 782-1650 622 Washington Street Fax: Watertown, NY 13601 Carl J. Crosley, MD SUNY UPSTATE MEDICAL UNIVERSITY (315) 464-501 750 East Adams Street, Room 6421 Burk Jubelt, MD Syracuse, NY 13210-2375 (315) 464-4627 Jeremy M. Shefner, MD, PhD (315) 464-5358 4 Robert R. Taylor, Jr., MD UNITED HEALTH SERVICES- (617) 770-6000 WILSON MEMORIAL HOSPITAL Fax: Muscular Systrophy Clinic 33-57 Harrison Street Johnson City, NY 13790 HSA Director/Telephone Center Name and Address 5 Neil S. Lava, MD ALBANY MEDICAL CENTER (518) 262-5226Muscular Dystrophy Clinic Fax: (518) 262-5041 Department of Neurology - A70 47 New Scotland Avenue Albany, NY 12208 6 Robert Lovelace, MD HELEN HAYES HOSPITAL (845) 786-4097 Route 9W Fax: West Haverstraw, NY 10993 7 Alfred J. Spiro, MD MONTEFIORE MEDICAL CENTER Bronx (718) 430-3814/3660 Muscle Disease Clinic Christina Rosa-Ragnona Rousso Building (718) 793-11001515 Blondel Avenue Bronx, NY 10461 7 Roger W. Kula, MD LONG ISLAND COLLEGE HOSPITAL Brooklyn (718) 780-1124 Department of Neurology Fax: (718) 780-2699 339 Hicks Street Brooklyn, NY 11201-5514 7 Darryl DeVivo, MD COLUMBIA PRESBYTERIAN MEDICAL Manhattan Michio Hirano, MD CENTER Hiroshi Mitsumoto, MD Neurological Institute (212) 305-5244710 West 168th Street New York, NY 10032 Alfred D. Grant, MD HOSPITAL FOR JOINT Mary Lynn Chu, MD DISEASES/ORTHOPĆDIC INSTITUTE Ellen Moran, MSMuscular Dystrophy Association (212) 598-6203/6605 Clinic Fax: 301 East 17th Street New York, NY 10003 Adam N. Bender, MD MOUNT SINAI MEDICAL CENTER Joan Batten, RNMuscular Dystrophy Program (212) 876-5670One Gustave L. Levy Place Mark Sivak, MD New York, NY 10029 (212) 241-8168 Fax: (212) 996-8391 Abraham Chutorian, MD NEW YORK HOSPITAL/CORNELL (212) 746-3278 MEDICAL CENTER Pediatric Neurology 525 East 68th Street New York, NY 10021 HSA Director/Telephone Center Name and Address Heidi Goldstein, MD NEW YORK UNIVERSITY MEDICAL David Younger, MD CENTER (212) 263-6350 Muscular Dystrophy Program Fax: 400 East 34th Street Room RG-29 New York, NY 10016 7 Lydia Evitar, MD NORTH SHORE LONG ISLAND Queens (718) 470-3453 JEWISH MEDICAL CENTER Fax: (718) 343-5826 Schneider Children's Hospital Department of Pediatric Neurology 269-01 76TH Avenue, Room 267 New Hyde Park, NY 11040 8 Joel S. Delfiner, MD NASSAU COUNTY MEDICAL CENTER (631) 572-3107 Muscular Dystrophy Association Fax: (516) 572-5715 Clinic Department of Neurology 2201 Hempstead Turnpike East Meadow, NY 11554 Scott McWilliams, MD ST. CHARLES HOSPITAL AND (631) 474-6030 REHABILITATION CENTER 200 Belle Terre Road Port Jefferson, NY 11777 James Davis, MD SUNY AT STONY BROOK (631) 444-2599 Muscular Dystrophy Association FAX: (631) 444-1474 Clinic Neurology Associates of Stony Brook HSC - Level 12 Stony Brook, NY 11794-8121 THE NEW YORK STATE FUNDED EXPANDED COMPREHENSIVE SICKLE CELL SERVICES PROGRAM The Expanded Comprehensive Sickle Cell Services Program has received New York State Legislative funding since 1987. Presently there are 7 funded programs. Depending on the availability of New York State Legislative funding it is expected that these programs will receive funding until June 2002. HSA Director/Telephone Center Name and Address 2 Peter T. Rowley, MD UNIVERSITY OF ROCHESTER (716) 275-3461 SCHOOL OF MEDICINE Fax: (716) 273-1034 Division of Genetics E-mail: peter_rowley@urmc. Box 641, 601 Elmwood Avenue rochester.edu Rochester, NY 14642 5 Richard Sills, MD ALBANY MEDICAL CENTER (518) 262-5513 Department of Pediatrics Fax: (518) 262-5889 47 New Scotland Avenue Albany, NY 12208 7 Thomas Moulton, MDLINCOLN MEDICAL AND MENTAL HEALTH CENTER Bronx (718) 579-5800 234 East 149th Street Fax: (718)579-4700 Bronx, NY 10451 E-mail: TAM1@columbia.edu 7 Kusum Viswanathan, MDTHE BROOKDALE UNIVERSITY HOSPITAL Brooklyn (718) 240-5904 AND MEDICAL CENTER fAX: (718) 240-6730 One Brookdale Plaza Brooklyn, NY 11212 HSA Director/Telephone Center Name and Address Swayam Sadanandan, MD INTERFAITH MEDICAL CENTER (718) 935-7888555 Prospect Place Fax: (718) 935-7872 Brooklyn, NY 11238 Scott T. Miller, MD SUNY DOWNSTATE MEDICAL CENTER (718) 245-4077450 Clarkson Avenue, Box 49 (718) 270-2843Brooklyn, NY 11203 7 Edwin Robins, MD ST. LUKE'S-ROOSEVELT HOSPITAL Manhattan (212) 523-3103 CENTER Fax: (212) 523-1839 Comprehensive Sickle Cell Center 1090 Amsterdam Avenue Third Floor New York, NY 10025 SICKLE CELL SERVICE CENTERS Sickle cell anemia occurs in 1 in 400-500 African-Americans and in 1 in 1,500 Hispanics. Each year approximately 300 new cases of sickle cell disease are identified in the GENES region through mandated newborn screening. This is the most common genetic disorder in any ethnic group in the region. There are currently many programs that provide follow-up testing, counseling and treatment for patients with sickle cell disease and/or trait and their families. Standard laboratory services are available at most sickle cell service centers. These tests may include CBC with indices, hemoglobin electrophoresis and assays for hemoglobins S, F, and A2. Only hemoglobin electrophoresis or DNA mutation determinations can accurately determine sickle cell status. Other methods have been proven to be unreliable. They should only be used in an emergency and only with follow-up electrophoresis. CHILDREN'S HOSPITAL OF BUFFALO HSA: 1 Address: Children's Hospital of Buffalo Sickle Cell Center of Western New York 219 Bryant Street Buffalo, NY 14222 Telephone: (716) 878- 7412/7349 Fax: (716) 888-3801 Staff: Director: Mauro Grossi, MD Clinic Coordinator: Laurie Valvo, RN, PNP Clinical Services: Pediatric hematology and sickle cell clinics Screening Services: Those at risk: pediatrics, adults, pregnant women, free community screening Laboratory Services: Available Other Services: Education Social Services ERIE COUNTY MEDICAL CENTER HSA: 1 Address: Erie County Medical Center 462 Grider Street Buffalo, NY 14215 Telephone: (716) 898-3451 Fax: (716) 898-3090 Staff: Director of Laboratories: Daniel Amsterdam, PhD Reid R. Heffner, Jr., MD Director, Division of Hematology: Leorosa Lehman, MD Clinical Services: Adult hematology clinic Screening Services: Laboratory Services: Available Other Services: ROCHESTER GENERAL HOSPITAL HSA: 2 Address: Rochester General Hospital 1415 Portland Avenue Rochester, NY 14621 Telephone: (716) 338-4081 Fax: (716) 338-2347 Staff: Chief, Adult Hematology/Medi cal Oncology Unit: Pradyumna D. Phatak, MD Clinical Services: Adult hematology clinic and cancer center For pediatric care see listing for Children's Hospital at Strong Screening Services: Adults, pregnant women, pediatrics Laboratory Services: Available Other Services: Education and genetic counseling CHILDREN'S HOSPITAL AT STRONG HSA: 2 Address: Children's Hospital at Strong 601 Elmwood Avenue, Box 777 Rochester, NY 14642 Telephone: (716) 275-2981 Fax: (716) 273-1039 Web page: www.stronghealth.com/ childrens.htm Staff: Chief, Pediatric Hematology/Oncology and Genetics: George B. Segel, MD Pediatric Sickle Cell Clinic: Norma Lerner, MD Patricia Lamarche, RN, PNP Chairman, Division of Genetics: Peter T. Rowley, MD Clinical Services: Pediatric hematology clinic Adult hematology clinic Screening Services: Pediatrics and adults through the Department of Genetics Laboratory Services: Available Other Services: Genetic Counseling Social Services Support Group SUNY UPSTATE MEDICAL CENTER HSA: 3 Address: SUNY Upstate Medical Center 750 East Adams Avenue Syracuse, NY 13210 Telephone: (315) 464-5294 Fax: (315) 464-7238 Staff: Director, Comprehensive Sickle Cell Center, Pediatric Hematology A. Stephen Dubansky, MD Adult Sickle Cell Nurse Coordinator: Phyllis Bayen, RN (315) 464-8200 Clinical Services: Pediatric hematology clinic Adult Hematology/Onco logy Center Screening Services: Pediatric hematology clinic Laboratory Services: Available Other Services: Genetic Counseling Social Services ALBANY MEDICAL CENTER HSA: 5 Address: Albany Medical Center 47 New Scotland Avenue, A-24 Albany, NY 12208 Telephone: (518) 262-5513 Fax: (518) 262-5889 Staff: Head, Division of Pediatric Hematology/Oncology: Richard Sills, MD Pediatric Hematology/Oncology: Jennifer M. Pearce, MD Adult Hematology: Harry Dunn, MD Sickle Cell Service Coordinator: Christina Gray, RN Clinical Services: Ambulatory and inpatient services Pediatric and adult hematology Screening Services: Those at risk only: pediatrics, adults Laboratory Services: Available Other Services: Education Genetic Counseling Patient/Parent Support Group Social Services ELLIS HOSPITAL HSA: 5 Address: Ellis Hospital 1101 Nott Street Schenectady, NY 12308 Telephone: (518) 243-4129 Fax: (518) 243-1599 Staff: Director of Hematology, Department of Special Hematology: George D. Vlahides, MD Clinical Services: Pediatric and adult hematology clinic Screening Services: Pediatrics, adults, pregnant women (those at risk only) Laboratory Services: Available Other Services: Social Services ST. PETER'S HOSPITAL HSA: 5 Address: St. Peter's Hospital 240 New Scotland Avenue Albany, NY 12208 Telephone: (518) 438-3104 Fax: (518) 438-3106 Staff: Hematology Department: Frank A. Lizzi, MD Clinical Services: Pediatrics and adults Screening Services: Those at risk only: pediatric, adult, pregnant women, community screening (with fee) Laboratory Services: Available Other Services: Education Social Services NEW YORK MEDICAL COLLEGE HSA: 6 Address: New York Medical College Pediatrics Munger Pavilion, Room 110 Valhalla, NY 10595 Telephone: (914) 285-7997 (pediatrics) (914) 285-8353 (adults) Staff: Chief, Pediatric Hematology/Onco logy: S. Jayabose, MD Chief, Hematology/Oncology Division, Department of Medicine: Robert Lerner, MD Clinical Services: Pediatric hematology clinic Adult hematology clinic Screening Services: Pediatrics, adults, pregnant women (those at risk only), community screening (with fee) Laboratory Services: Available Other Services: Education Genetic Counseling ALBERT EINSTEIN COLLEGE OF MEDICINE HSA/Borough: 7/Bronx Address: Albert Einstein College of Medicine General Clinical Research Center 1300 Morris Park Avenue Bronx, NY 10461 Telephone: (718) 430-2000 (718) 430-2186 Fax: (718) 824-3153 Staff: Heredity Clinic: Henny Billett, MD Adult Hematology: Ronald L. Nagel, MD Clinical Services: Adults Screening Services: Pediatrics, adults, pregnant women (those at risk only), community screening Laboratory Services: Available Other Services: BRONX-LEBANON HOSPITAL HSA/Borough: 7/Bronx Address: Bronx-Lebanon Hospital 1650 Grand Concourse Bronx, NY 10457 Telephone: (718) 960-1078 (adults) (718) 590-1800, Ext. 489/521 (pediatrics) Fax: (718) 518-5079 Staff: Chief, Hematology Division: Z.A. Schreiber, MD Director, Pediatric Hematology: Martha S. Wong, MD Clinical Services: Pediatrics - Dr. Wong Adults - Dr. Schreiber Screening Services: Pediatrics, adults, pregnant women, community screening Laboratory Services: Available Other Services: Education Genetic Counseling Social Services BRONX VETERAN AFFAIRS MEDICAL CENTER HSA/Borough: 7/Bronx Address: Bronx Veteran Affairs Medical Center Sickle Cell Program 130 West Kingsbridge Road Bronx, NY 10468 Telephone: (718) 584-9000 ext. 6669, 6652 Fax: (718) 741-4647 Staff: Assistant Chief, Hematology; Principal Investogator, Sickle Cell Program: Thomas Muhlfelder, MD Clinical Services: Adult hematology clinic Screening Services: All veterans screened at no charge Laboratory Services: Available Other Services: LINCOLN MEDICAL & MENTAL HEALTH CENTER HSA/Borough: 7/Bronx Address: Lincoln Medical & Mental Health Center 234 East 149th Street, Suite 420 Bronx, NY 10451 Telephone: (718) 579-5800 Fax: (718) 579-4700 Staff: Chief of Hematology, Department of Pediatrics: Thomas Moulton, MD Clinical Services: Pediatrics, adults Screening Services: Pediatrics, pregnant women (those at risk only), free community screening Laboratory Services: Available Other Services: Psychological Counseling Social Services MONTEFIORE MEDICAL CENTER HSA/Borough: 7/Bronx Address: Montefiore Medical Center Bronx Comprehensive Sickle Cell Center 111 East 210th Street Bronx, NY 10467 Telephone: (718) 920-7375/7373 Fax: (718) 798-5095 Staff: Director, Pediatric Hematology: Eva Radel, MD Clinical Services: Pediatrics, adults Screening Services: Pediatrics, adults Laboratory Services: Available Other Services: Education Genetic Counseling Social Services OUR LADY OF MERCY MEDICAL CENTER HSA/Borough: 7/Bronx Address: Our Lady of Mercy Medical Center 600 East 233rd Street Bronx, NY 10466 Telephone: (718) 920-9014 Fax: (718) 920-9709 Staff/Programs: Chief, Adult Hematology: Peter Wiernik, MD Chief, Pediatric Hematology: Indira Dasgupta, MD Clinical Services: Pediatrics hematology clinic Screening Services: Pediatrics, adults, pregnant women (those at risk only) Laboratory Services: Available Other Services: Education Genetic Counseling Social Services BROOKDALE HOSPITAL MEDICAL CENTER HSA/Borough: 7/Brooklyn Address: Brookdale Hospital Medical Center One Brookdale Plaza Brooklyn, NY 11212 Telephone: (718) 240-5904 Fax: (718) 240-5042 Staff: Chief, Hematology/Oncology: Stanley Lee, MD Director, Sickle Cell Clinic: Kusum Viswanathan, MD Clinical Services: Pediatric sickle cell clinic Adult sickle cell clinic Screening Services: Pediatrics, adults, pregnant women Laboratory Services: Available Other Services: Education Genetic Counseling THE BROOKLYN HOSPITAL CENTER HSA/Borough: 7/Brooklyn Address: The Brooklyn Hospital Center 121 Dekalb Avenue Brooklyn, NY 11201 Telephone: (718) 250-6074 Fax: (718) 250-6518 Staff: Chief, Pediatric Hematology/Onco logy Swayam Sadanandan, MD Chief, Hematology/Onco logy Perry Cook, MD Nurse/Health Educator Carolyn McGheachey- Price, RN Clinical Services: Pediatric hemoglobinopathy clinic Adult hemoglobinopath y clinic Screening Services: Pediatrics, adults, pregnant women Laboratory Services: Available Other Services: Education Genetic Counseling Social Services CONEY ISLAND HOSPITAL HSA/Borough: 7/Brooklyn Address: Coney Island Hospital 2601 Ocean Parkway Brooklyn, NY 11235 Telephone: (718) 616-3219 Fax: (718) 616-4435 Staff: Director, Pediatric Hematology: Concepcion V. Tan, MD Director, Division of Hematology and Oncology: Joel Schwartz, MD Associate Director, Division of Hematology and Oncology: Shafkat Hussain, MD Clinical Services: Pediatrics, adult Screening Services: Pediatrics, adults (those at risk only), community screening Laboratory Services: Available Other Services: Education Genetic Counseling Psychiatric Counseling Rehabilitation Social Services INTERFAITH MEDICAL CENTER HSA/Borough: 7/Brooklyn Address: Interfaith Medical Center 555 Prospect Place Brooklyn, NY 11238 Telephone: (718) 935-7888 Staff: Chief, Pediatric Hematology; Director, Sickle Cell/Thalassemi a Program: Swayam Sadanandan, MD Pediatric and Adult Sickle Cell/Thalassemi a Program Coordinator: Miren Blackwood Clinical Services: Pediatric and Adult Sickle Cell/Thalassemia Program Screening Services: Pediatrics, adults, pregnant women, community screening (free) Newborn Screening Follow-up Laboratory Services: Available Other Services: Education Genetic Counseling: Sickle Cell/Thalassemi a Patient Support Group (Support, group education, fund raising) Social Services MAIMONIDES MEDICAL CENTER HSA/Borough: 7/Brooklyn Address: Maimonides Medical Center 4802 10th Avenue Brooklyn, NY 11219 Telephone: (718) 283-7229 Fax: (718) 283-6268 Staff: Director, Division of Pediatric Hematology/Oncology: Ludovico Guarini, MD Clinical Services: Pediatrics, Adults, Prenatal Screening Services: Pediatrics, adults, pregnant women (those at risk only) Laboratory Services: Other Services: Genetic Counseling NEW YORK METHODIST HOSPITAL HSA/Borough: 7/Brooklyn Address: New York Methodist Hospital 506 Sixth Street Brooklyn, NY 11215 Telephone: (718) 780-3246 - Department of Medicine (718) 857-5643 - Sickle Cell/Thalassemi a Program Fax: (718) 857-6798 Staff: Chief, Sickle Cell/Thalassemi a Program Rita Bellevue, MD Clinical Services: Pediatrics, Adults, Prenatal Screening Services: Pediatrics, adults, pregnant women Laboratory Services: Other Services: Genetic Counseling Social Services SUNY DOWNSTATE MEDICAL CENTER/ KINGS COUNTY HOSPITAL HSA/Borough: 7/Brooklyn Address: SUNY Downstate Medical Center 450 Clarkson Avenue, Box 49 Brooklyn, NY 11203 Kings County Hospital Pediatric Sickle Cell Service Adult Sickle Cell Program 451 Clarkson Avenue Brooklyn, NY 11203 Telephone: (718) 245-4077/(718) 270-1693 Fax: (718) 270-1985 Staff: Director, Pediatric Hematology/Oncology and Pediatric Sickle Cell Program: Sreedhar P. Rao, MD Associate Professor of Clinical Pediatrics Scott T. Miller, MD E-mail: stmseelig@aol.com Director, Adult Sickle Cell Program William Solomon, MD Clinical Services: Pediatric sickle cell clinic Screening Services: Pediatrics, adults, pregnant women, community screening Laboratory Services: Available Other Services: Comprehensive patient care Clinical research Web page: www.research.hscbkln. edu/pscp/smseelig.htm WOODHULL MEDICAL & MENTAL HEALTH CENTER HSA/Borough: 7/Brooklyn Address: Woodhull Medical & Mental Health Center 760 Broadway Brooklyn, NY 11206 Telephone: (718) 963-7958 Fax: (718) 963-7957 Staff: Associate Director, Department of Pediatrics: John W. Moohr, MD Adult Hematology: Sundaram Raju, MD Clinical Services: Pediatrics (0-19 years): Adult (older than 19 years): Screening Services: All newborns, all pregnant women, patients at risk Laboratory Services: Other Services: Education Genetic Counseling Social Services BETH ISRAEL MEDICAL CENTER HSA/Borough: 7/Manhattan Address: Beth Israel Medical Center First Avenue at 16th Street New York, NY 10003 Telephone: (212) 844-8288 Fax: (212) 240-4385 Staff: Chief, Division of Hematology: Ralph Zalusky, MD Pediatric Hematology: Revathy Sundaram, MD Clinical Services: Pediatric and adult hematology clinic Screening Services: Pediatrics, adults, pregnant women (those at risk only) Laboratory Services: Available Other Services: Genetic Counseling COLUMBIA-PRESBYTERIAN MEDICAL CENTER HSA/Borough: 7/Manhattan Address: Columbia- Presbyterian Medical Center 622 West 168th Street New York, NY 10032 Telephone: (212) 932-5557 Fax: (212) 923-2090 Staff: Chief, Adult Sickle Cell Program Michael Flamm, MD Director, Division of Adult Hematology Arthur Bank, MD Director, Division of Pediatric Hematology Sergio Piomelli, MD Clinical Services: Pediatric Sickle Cell Clinic Adult Sickle Cell Clinic Screening Services: Pediatrics, adults, all pregnant women Laboratory Services: Available Other Services: Genetic Counseling Patient Group Social Services HARLEM HOSPITAL CENTER HSA/Borough: 7/Manhattan Address: Harlem Hospital Center Comprehensive Sickle Cell Center 135th Street and Lenox Avenue - Suite 6146 New York, NY 10037 Telephone: (212) 939-1702 Fax: (212) 939-1692 Staff: Director, Pediatric Hematology Yusuf Khakoo, MD Director, Comprehensive Sickle Cell Center Jeanne A. Smith, MD Clinical Services: Pediatric and adult sickle cell clinic Screening Services: Newborn (cord blood), pediatrics, adults, pregnant women, community screening Laboratory Services: Available Other Services: Education Genetic Counseling Parents Group Social Services MOUNT SINAI MEDICAL CENTER HSA/Borough: 7/Manhattan Address: Mount Sinai Medical Center One Gustave Levy Place New York, NY 10029 Telephone: (212) 241-6031 Fax: (212) 360-6921 Staff: Chief, Division of Pediatric Hematology: Hurlett, Anne, MD Hematologists: Deepa Manwanim, MD Mary Sugre, MD Clinical Services: Pediatric sickle cell clinic Adult sickle cell clinic Screening Services: Those at risk only: pediatrics, adults, pregnant women Laboratory Services: Available Other Services: Genetic Counseling Molecular Diagnosis and Prenatal Diagnosis Parents Group Social Services THE NEW YORK HOSPITAL - CORNELL MEDICAL CENTER HSA/Borough: 7/Manhattan Address: The New York Hospital-Cornell Medical Center 525 East 68th Street New York, NY 10021 Telephone: (212) 746-3400 Fax: (212) 746-8809 Staff: Chief, Division of Pediatric Hematology/Oncology; Director, Thalassemia Center: Patricia J. V. Giardina, MD Director, Sickle Cell Clinic: Katherine A. Hajjar, MD Clinical Services: Pediatrics, adults Screening Services: Those at risk only: pediatrics, adults, pregnant women Laboratory Services: Available Other Services: Genetic Counseling Social Services NEW YORK UNIVERSITY MEDICAL CENTER/ BELLEVUE HOSPITAL CENTER HSA/Borough: 7/Manhattan Address: New York University Medical Center 550 First Avenue New York, NY 10016 Bellevue Hospital Center 480 First Avenue New York, NY 10016 Telephone: (212) 263-7226 Fax: (212) 263-7036 Staff: Department of Medicine: Kenneth Hymes, MD Department of Pediatrics: David Hart, MD Clinical Services: Pediatric hematology clinic Adult hematology clinic Screening Services: Pediatrics, adults, pregnant women (those at risk only), community screening (available with fee) Laboratory Services: Available Other Services: Genetic Counseling Professional Education Psychological Counseling Social Services ST. LUKE'S/ROOSEVELT HOSPITAL CENTER HSA/Borough: 7/Manhattan Address: St. Luke's/Roosevelt Hospital Center Comprehensive Sickle Cell Program 1111 Amsterdam Avenue New York, NY 10025 (mailing address) 411 West 114th Street, Suite 2C (site address) Telephone: (212) 523-3103 Fax: (212) 523-1839 Staff: Director: Edwin Robins, MD Pediatric Hematologists: Ranjeet Grover, MD Millicent Sutton, MD Adult Hematologists: Gloria M. Ramirez, MD Nurse Coordinator: Viola Knors, RN, CNS Pediatric Genetics: Elaine Wilkes Clinical Services: Sickle Cell Clinics: Special Newborn, Pediatric, Adolescent, and Adult Pediatric Genetics Screening Services: Newborn Screening Program Other Services: Education Social Services SAINT VINCENT CATHOLIC MEDICAL CENTERS OF NEW YORK, RICHMOND REGION HSA/Borough: 7/Staten Island Address: Saint Vincent Catholic Medical Centers of New York, Richmond Region 355 Bard Avenue Staten Island, NY 10310 Telephone: (718) 876-4636 Fax: (718) 876-2739 Staff: Coordinator, Pediatric Hematology/Onco logy: Joan Graziano, MD Clinical Services: Pediatric and adult hematology clinic Screening Services: Pediatrics, adults, pregnant women, community screening (sliding fee scale) Laboratory Services: Available Other Services: Education Genetic Counseling Psychiatric Counseling Social Services STATEN ISLAND UNIVERSITY HOSPITAL HSA/Borough: 7/Staten Island Address: Staten Island University Hospital Nalitt Cancer Institute Cancer Genetics and Risk Assessment Service 256 Mason Avenue Staten Island, NY 10305 Telephone: (718) 226-6400 Fax: (718) 226-6467 Staff: Director, Medical Oncology/Hematology Clinic: Frank J. Forte, MD Director, Medical Oncology/Hematology- South: Terenig Terjanian, MD Director, Pediatric Hematology/Oncology: Daniel Potaznik, MD Director, Autologous Bone Marrow Transplant Program Charles Zaroulis, MD Attending Physicians Hematology/Oncology: Marcel Odaimi, MD Irina Pleskova, MD Ronald Scheff, MD Mary Vesoniaraki, MD Clinical Services: Pediatric and Adult Hematology Clinic Autologous Bone Marrow Transplant Program Screening Services: Children, adolescents, adults, pregnant women, free community screening Laboratory Services: Available Other Services: Genetic counseling Patient and parent group Psychological counseling Social services BOOTH MEMORIAL MEDICAL CENTER HSA/Borough: 7/Queens Address: Booth Memorial Medical Center 29-16 174th Street Fresh Meadows, NY 11365 Telephone: (718) 460-2300 Fax: (718) 460-9697 Staff: Director, Hematology/Onco logy: Barry H. Kaplan, MD Clinical Services: Adult Hematology Clinic Screening Services: Those at risk only: pediatrics, adults, pregnant women, community screening with fee Pediatric screening Laboratory Services: Other Services: CITY HOSPITAL AT ELMHURST HSA/Borough: 7/Queens Address: City Hospital at Elmhurst 79-01 Broadway Elmhurst, NY 11373 Telephone: (718) 334-4000 Fax: (718) 334-5759 Staff: Pediatric Hematology Lila Shah, MD Karen L. Kaplan, MD Clinical Services: Pediatric hematology clinic Adult hematology clinic Screening Services: Pediatrics, pregnant women, adults at risk only Laboratory Services: Avaialble Other Services: Education, Counseling Services Social Services THE JAMAICA HOSPITAL MEDICAL CENTER HSA/Borough: 7/Queens Address: The Jamaica Hospital Medical Center 89-06 135th Street Jamaica, NY 11418 Telephone: (718) 206- 6717/6720 Fax: (718) 206-6719 Staff: Director, Clinical Hematology Malcolm E. Levine, MD Pediatric Hematology: Phyllis Weiner, MD Clinical Services: Pediatrics Adults Screening Services: Those at risk only: pediatric, adult, pregnant women, community screening (with fee) Laboratory Services: Available Other Services: Education Social Services MARY IMMACULATE HOSPITAL HSA/Borough: 7/Queens Address: Mary Immaculate Hospital 152-11 89th Avenue Jamaica, NY 11432 Telephone: (718) 558-7160 (718) 558-2260 Fax: (718) 558-7205 Staff: Physician-in-Charge, Pediatric Hematology Mozafar Salemi, MD Clinical Services: Pediatrics Screening Services: Pediatrics (entire population), adults, pregnant women (those at risk only), community screening Laboratory Services: Available Other Services: Psychological/Psychiatric Counseling Social Services GOOD SAMARITAN HOSPITAL HSA: 8 Address: Good Samaritan Hospital 1000 Montauk Highway West Islip, NY 11795 Telephone: (631) 376-4095 Fax: (631) 376-3547 Staff: Herold Duraseau, MD Clinical Services: Pediatrics Screening Services: Pediatrics Laboratory Services: Other Services: Education NASSAU COUNTY MEDICAL CENTER HSA: 8 Address: Nassau County Medical Center 2201 Hempstead Turnpike East Meadow, NY 11554 Telephone: (516) 572-6177/5798 Fax: (516) 572-5483 Staff: Director, Pediatric Hematology: Dominick Sabatino, MD Pediatric Hematologist: Sujatha Kosuri, MD Nurse Coordinator, Sickle Cell Program: Barbara Shotter, RN Clinical Services: Pediatrics and adults Screening Services: Pediatrics, adults, pregnant women Laboratory Services: Available Other Services: Genetic Counseling: Social Services Education, Patient and Parent Group Prenatal Diagnostic Center NORTH SHORE UNIVERSITY HOSPITAL HSA: 8 Address: North Shore University Hospital 300 Community Drive Manhassset, NY 11030 Telephone: (516) 562-4634 Fax: (516) 562-4747 Staff: Chief, Division of Pediatric Hematology Joseph A. Kochen, MD Chief of Adult Hematology/Onco logy Vincent Vinciguerra, MD Clinical Services: Pediatric and Adult Hematology Clinic Screening Services: Pediatrics, adults (those at risk only), community screening (sliding fee scale) Laboratory Services: Available Other Services: Education Genetic Counseling Patient Group Social Services NORTH SHORE UNIVERSITY HOSPITAL AT GLEN COVE HSA: 8 Address: North Shore University Hospital at Glen Cove Don Monti Cancer Center 101 St. Andrews Lane Glen Cove, NY 11542 Telephone: (516) 674-7430 Fax: (516) 674-5010 Staff: Adult Hematology: Francis X. Moore, MD Chief of Pediatrics: John Sheehy, MD Clinical Services: Through private physicians Screening Services: Those at risk only: community screening (with fee) Laboratory Services: Available Other Services: Education Social Services NORTHPORT VETERAN AFFAIRS MEDICAL CENTER HSA/Borough: 8 Address: Northport Veteran Affairs Medical Center Hematology/Onco logy - 111S 79 Middleville Road Northport, NY 11768-2290 Telephone: (631) 261-4400 ext. 2586 Fax: (631) 266-6005 Staff: Chief, Hematology/Onco logy; M.H. Zarrabi, MD Hematologist/On cologist: S. Zucker, MD Clinical Services: Adult hematology clinic Screening Services: Adults (those at risk only) Laboratory Services: Available Other Services: GRETA M. RAINSFORD, MD HSA: 8 Address: Greta M. Rainsford, MD 756 Front Street Hempstead, NY 11550- 4626 (Private patients; Medicaid payments accepted) Telephone: (516) 481-6633 Fax: (516) 486-6238 Staff: Clinical Services: Pediatrics and adults Screening Services: Laboratory Services: Available through Mercy Medical Center Other Services: Parents Group Patients Group Psychological Counseling SUNY AT STONY BROOK HSA: 8 Address: SUNY at Stony Brook University Hospital Division of Pediatric Hematology/Onco logy Room 020 HSC, T-11 Stony Brook, NY 11794-8111 Telephone: (631) 444-2700 Fax: (631) 444-7865 Staff: Pediatric Hematology: Devina Prakash, MD Clinical Services: Pediatric Hematology Clinic Hemoglobin Treatment Center Adult Hematology Clinic Screening Services: Pediatrics, adults, pregnant women (those at risk only), community screening (with fee) Laboratory Services: Available Other Services: Genetic Counseling: Psychological Counseling Social Services, Vocational Rehabilitation WINTHROP UNIVERSITY HOSPITAL HSA: 8 Address: Winthrop University Hospital Division of Pediatric Hematology/Oncology 200 Old Country Road, Suite 440 Mineola, NY 11501 Telephone: (516) 663-9400 Fax: (516) 663-9482 Staff: Pediatric Hematology: Mark P. Atlas, MD Staff Nurse: Susan Davis, RN Clinical Services: Pediatric Hematology Clinic Adult Hematology Clinic Screening Services: Pediatrics, adults, pregnant women (those at risk only), community screening (with fee) Laboratory Services: Other Services: Genetic Counseling Psychological Counseling Social Services Vocational Rehabilitation VIRGIN ISLANDS COMPREHENSIVE CARE PROGRAM FOR SICKLE HEMOGLOBINOPATHY HSA: County: Address: Virgin Islands Comprehensive Care Program for Sickle Hemoglobinopath y Departments of Maternal and Child Health and Children With Special Health Care Needs Charles Harwood Complex 3500 Estate Richmond Christiansted, St. Croix, VI 00820-4370 Telephone: (340) 776-3580 (340) 773-1311 ext. 3158 Fax: (340) 773-1376 Staff: Project Director: Mavis Matthew, MD, MPH Hematologist Consultant: Luis Clavell, MD Pediatrics Nurse Specialist: Magda Finch, RN Clinical Services: Screening Services: Laboratory Services: Other Services: TERATOGEN INFORMATION SERVICES All comprehensive genetic services have the resources and expertise to discuss teratogen exposure with genetic service professionals or patients, either over the phone or during a face- to-face encounter. In some cases, however, the specialized knowledge available within the service unit to comprehensively discuss a specific teratogen may be limited. Specialized Teratogen Information Services have developed throughout the country to accumulate thorough and timely information on many potentially teratogenic substances. These services can be useful for the professional researching information for a client or for a patient who is looking for more detail than is presently available to her about a substance which may or may not affect a developing fetus or be of concern for a future pregnancy. PREGNANCY RISK NETWORK (PRN) HSA: 1 Address: Pregnancy Risk Network (PRN) 976 Delaware Avenue Buffalo, NY 14209 Telephone: (716) 882-6791 x 270, 235 (800) 724-2454 (NYS only) Fax: (716) 882-6781 Affiliation: Children's Hospital of Buffalo Department of Pediatrics Division of Genetics Organization of Teratology Information Services (OTIS) Staff: Medical Director Luther K. Robinson, MD Program Coordinator: Sandra Gangell, RN Special Services: Infant exposure follow-up program Telephone information regarding exposures during pregnancy Research Interests: Recognition of new teratogens Cognitive profiles of infants with fetal exposures Hours: Monday through Friday 8:30 a.m. to 4:00 p.m. Special Languages: Special Resources: Craniofacial Center of Western New York Developmental Pediatrics, Robert E. Warner Rehabilitation Center Toxicology Research Center, SUNY at Buffalo Restrictions: The PRN responds to telephone inquiries regarding the possible adverse effects of prenatal exposures on the developing fetus. We are funded to serve callers residing in the eight counties of Western New York. Because of funding restrictions, calls from outside our catchment area must be made by a genetic counselor or other health care provider. All calls will be prioritized by place of origin. PERINATAL ENVIRONMENTAL AND DRUG EXPOSURE CONSULTATION SERVICE (PEDECS) HSA: 2 Address: Perinatal Environmental and Drug Exposure Consultation Service (PEDECS) University of Rochester School of Medicine Department of Obstetrics and Gynecology 601 Elmwood Avenue Rochester, NY 14642-8668 Telephone: (716) 275-3638 Fax: (716) 756-5721 Staff: Director Richard K. Miller, Ph.D. Special Services: Occupational Medicine Clinic PEDECS Clinic Research Interests: ACE inhibitors Anti-HIV Reproductive and developmental toxicity of metals and solvents Retinoids Hours: Monday through Friday 8:30 a.m. to 4:00 p.m. Special Language: Special Resources: Restrictions: GENES THE GENETIC NETWORK OF NEW YORK, PUERTO RICO AND THE VIRGIN ISLANDS GENES is a federally designated region for networking of all people concerned about genetics services which includes New York State, Puerto Rico, and the Virgin Islands. This informal body includes individuals in the region with professional or personal interest in clinical genetics services and genetic disorders and birth defects. The primary purpose of GENES is to allow communication and cooperative exchange among all parties interested in provision of genetic services in the region. The list of GENES members includes all clinical geneticists, genetic counselors, support group representatives, etc., who have attended a GENES meeting or who have expressed interest or support. Meetings are held several times each year, and are co-chaired by Kenneth A. Pass, PhD, Director, Laboratory of Newborn Screening and Genetic Services, New York State Department of Health, and Lawrence R. Shapiro, MD of the Westchester County Medical Center. All in attendance may vote on any motion or recommendation. Suggested activities are then undertaken by volunteer committees or assigned to staff members at the Laboratory of Genetic Services. There are several committees of GENES at work on issues of importance to the membership. These committees include Cystic Fibrosis, chair - Elinor Langfelder-Schwind, MS, Saint Vincent Catholic Medical Center; Ethics, chair - Ian Porter, MD, Albany Medical Center; Genetic Testing, chair - Richard Erbe, MD Children's Hospital of Buffalo; and the Sickle Cell Advisory Committee, co-chairs - Kusum Viswanthan, MD, Brookdale Hospital Medical Center and Cheryl Hunter-Grant, MSW, of the Children's Defense Fund. New York State Department of Health staff are available to GENES and the committees to facilitate meetings and communication. Katharine B. Harris, MBA is the GENES Coordinator. Participation by consumers - support group representatives and others - has always been encouraged. Most meetings include presentations by support group representatives. Funded by the Federal Department of Health and Human Services, Division of Maternal and Child Health as a Special Program of Regional and National Significance (SPRANS), this program is administered by Health Research, Inc. and the New York State Department of Health. The mailing list for GENES can be accessed at any time by contacting Ms. Harris at Wadsworth Center, Room E-299, Empire State Plaza, P.O. Box 509, Albany, NY 12201-0509; (518) 474-7148. Also available is the mailing list for GENESIS, the newsletter of GENES. It is more comprehensive and includes many health professionals with specific interest in single genetic disorders such as sickle cell disease, cystic fibrosis, muscular dystrophy. Cystic Fibrosis Committee The Cystic Fibrosis Committee is looking at the impact of the National Institutes of Health recommendations regarding carrier testing for cystic fibrosis for all prenatal patients. It is also looking at the frequency of the different mutations within different ethnic groups and the efficacy of screening. The Ethics Committee The Ethics Committee has made presentations at various GENES meetings on issues such as use of organs from anencephalic infants and the difference between "ethics" and "morals". The committee organized the 2000 GENES Conference titled Genomics and Informatics. The Genetic Testing Committee GENES' Genetic Testing Committee was formed to provide a forum for discussion of issues of importance to those providing amniocentesis, chorionic villus sampling, prenatal diagnosis counseling, and other prenatal diagnosis services. Committee meetings have addressed scientific issues such as appropriate management of chromosomal polymorphisms identified by amniocentesis as well as financial issues relating to reimbursement of genetic services and survival of programs. Committee members are kept aware of patient utilization rates for prenatal diagnostic services as recorded on patient contact forms received in the GENES office. Periodic conference calls prior to GENES meetings allow committee members to keep apprised of new developments and issues of concern. The committee organized the 1999 GENES Conference titled "New Developments in Prenatal Genetic Diagnosis." The Sickle Cell Advisory Committee GENES' Sickle Cell Advisory Committee (SCAC) is composed of health care providers, consumers and New York State Department of Health staff members who have an interest in sickle cell disease. The health care providers are hospital and community based. They include physicians, nurses, genetic counselors and social workers. The consumer representation includes members of organized self-help and support groups, as well as individuals who have sickle cell disease, their family members and other interested persons. The mission of this committee is to discuss matters pertaining to sickle cell hemoglobinopathies for the purpose of policy making, problem sharing/ solving, voicing of concerns and presentation of accomplishments. The committee believes that effective communication can be mutually beneficial as well as potentially instrumental in affecting legislative, professional, systemic, programmatic and societal changes. Since 1993 SCAC has hosted an annual Sickle Cell Symposium to examine state-of-art treatment modalities and patient/parent concerns. NEW YORK STATE GENETICS TASK FORCE, INC. The New York State Genetics Task Force, Inc., is a not-for-profit organization of genetic service providers which was formed in 1979. The purpose of the Task Force is to provide education in the fields of genetics, molecular biology and birth defects; and to encourage public and private support for education, training, clinical research and services in the fields of genetics and birth defects. Membership is open to persons engaged in the delivery of care related to clinical genetics and birth defects. 2001 BOARD OF DIRECTORS President Victor Penchaszadeh, MD,MS BETH ISRAEL MEDICAL CENTER (212) 420-4179 Division of Medical Genetics First Avenue at 16th Street New York, NY 10003 Vice President Shari Fallet, DO CHILDREN'S HOSPITAL OF NEW JERSEY AT NEWARK 201 Lyons Avenue Newark, NJ 07112 Secretary Ann-Leslie Zaslav, PhD NORTH SHORE LONG ISLAND JEWISH MEDICAL CENTER (718) 470-3014 SCHNEIDER CHILDREN'S HOSPITAL Division of Human Genetics 269-01 76th Street New Hyde Park, NY 11040 Treasurer Eva Beller, MS SUNY DOWNSTATE MEDICAL CENTER (718) 270-2924 Department of Obstetrics 450 Clarkson Avenue Brooklyn, NY 11203 M. Lita Alonso, MD NEW YORK HOSPITAL/CORNELL MEDICAL CENTER (212) 327-7232 Cytogenetics Laboratory 1230 York Avenue New York, NY 10021 Karen Brown, MS MOUNT SINAI MEDICAL CENTER (212) 241-6947 Department of Human and Molecular Genetics Box 1203 One Gustave L.Levy Place New York, NY 10029 Elinor Langfelder Schwind, MS SAINT VINCENT CATHOLIC MEDICAL (212) 604-8896 CENTERS OF NEW YORK 36 Seventh Avenue, Suite 509 New York, NY 10011 Julie McGlynn, MS MOUNT SINAI MEDICAL CENTER (212) 241-6647 Department of Human Genetics One Gustave L. Levy Place Box 1203 New York, NY 10029 Alan Shanske, MD MONTEFIORE MEDICAL CENTER (718) 405-8150 Division of Reproductive Genetics 1695 Eastchester Road Bronx, NY 10461 Susan Sklower Brooks, MD INSTITUTE FOR BASIC RESEARCH (718) 494-5221 1050 Forest Hill Road Staten Island, NY 10314 GENETIC DISEASE REGISTRIES REGISTRY Director/Telephone Center Name and Address Ataxia-TelangiectasiaMichael Swift, MDNEW YORK MEDICAL COLLEGE Registry (888) 21STUDY The Institute for the (914) 347-2592 Genetic Analysis of Fax: (914) 592-2275 Common Diseases Adminitrative Assistant: 4 Skyline Drive Patricia Murphy Hawthorne, NY 10532 Bloom's SyndromeJames L. German III, MD WEILL MEDICAL COLLEGE Registry (212) 746-3956 OF CORNELL UNIVERSITY Fax: (212) 746-0300Department of Pediatrics 1300 York Avenue New York, NY 10021 Breast Cancer Stephen Edge, MDROSWELL PARK CANCER INSTITUTE Registry Nurse: Linda O'Malley, RNDepartment of Surgical (716) 845-7667 Oncology Fax: (716) 845-3434 Elm & Carlton Streets Buffalo, NY 14263 Chromosome Ann Willey, PhD NEW YORK STATE DEPARTMENT Registry (518) 474-7885 OF HEALTH Contact: Wadsworth Center Nanette Healy Division of Genetic Disorders (518) 474-6796 P.O. Box 509 Albany, NY 12201-0509 Congenital Phil Cross NEW YORK STATE DEPARTMENT MalformationsCharlotte Druschel, PhD OF HEALTH Registry (518) 402-7990 Flanigan Square Fax: (518) 402-7769547 River Street, Room 200 Troy, NY 12180-2216 REGISTRY Director/Telephone Name and Address Dystonia Registry Stanley Fahn, MD NEUROLOGICAL INSTITUTE (212) 305-5779Center for Parkinson's Disease Fax: (212) 305-1304and Other Movement Disorders 710 West 168th Street 3rd Floor, Room 350 New York, NY 10032 Familial PolyposisMonica M. Bertagnolli, MDTHE NEW YORK HOSPITAL- Registry (617) 732-8910 CORNELL MEDICAL CENTER Fax: (617) 582-6177 Department of Surgery 525 East 68th Street, F-1922 New York, NY 10021 Familial Polyposis Nicholas J. Petrelli, ROSWELL PARK CANCER INSTITUTE Registry MD Division of Surgical Oncology Nurse: Linda O'Malley, RN Elm and Carlton Streets (716) 845-7667 Buffalo, NY 14263 (716) 845-5815 Family Cancer Nicholas Petrelli,ROSWELL PARK CANCER INSTITUTE Syndrome Registry MD Division of Surgical Oncology Nurse: Linda O'Malley, RN Elm and Carlton Streets (716) 845-7667 Buffalo, NY 14263 (716) 845-5815 Gilda Radner Familial Mary Ann RolandROSWELL PARK CANCER INSTITUTE Ovarian Cancer (716) 845-3497 Department of Gynecologic Registry (800) OVARIAN Oncology 666 Elm Street Buffalo, NY 14263 Hereditary Colon Kenneth Offit, MD MEMORIAL HOSPITAL-SLOAN Cancer Registry (212) 434-5152 (admin)KETTERING CANCER CENTER (212) 434-5149 (patients)Clinical Genetics Service Fax (212) 717-3129 222 East 70th Street New York, NY 10021 Hereditary Colon Monica M. Bertagnolli, MDSTRANG CANCER PREVENTION Cancer Registry (617) 732-8910 CENTER Fax (617) 582-6177 428 East 72nd Street New York, NY 10021 REGISTRY Director/Telephone Name and Address Hereditary Stephen Edge, MD ROSWELL PARK CANCER INSTITUTE Non-Polyposis Colon (716) 845-5789 Department of Surgical Cancer Registry Contact: Oncology Linda O'Malley, RN Elm and Carlton Streets (716) 845-7643 Buffalo, NY 14263 Fax: (716) 845-3434 International Krystyna E. Wisniewski, INSTITUTE FOR BASIC Batten's Disease MD, PhD RESEARCH (Neuronal Ceroid (718) 494-5202 1050 Forest Hill Road Lipofuscinosis) (800) 952-9628 Staten Island, NY 10314 Registry Fax: (718) 982-6346 Contact: Edith Dockter International FanconiArleen D. Auerbach,THE ROCKEFELLER UNIVERSITY Anemia Registry PhD HOSPITAL (IFAR) (212) 327-7533 Laboratory of Human Genetics Fax: (212) 327-8262 and Hematology E-mail: auerbac@rockvax.1230 York Avenue, Box 77 rockefeller.edu New York, NY 10021-6399 Lesch-Nyhan SyndromeLowell T. Anderson, PhD NEW YORK UNIVERSITY Registry (212) 263-6458 MEDICAL CENTER E-mail: ltal@is2.nyu.eduDepartment of Psychiatry 550 First Avenue New York, NY 10012 Long Q-T Syndrome Arthur J. Moss, MD UNIVERSITY OF ROCHESTER Registry Coordinator: SCHOOL OF MEDICINE Jennifer Robinson, MSHeart Research Follow-up (716) 275-5391 Program Fax: (716) 273-5283601 Elmwood Avenue, Box 653 Rochester, NY 14642-8653 Pancreatic Cancer/ Linda O'Malley, RNROSWELL PARK CANCER INSTITUTE Upper Gastrointestinal (716) 845-7667 Medical Oncology Cancer Registry Fax: (716) 845-8176Elm and Carlton Streets Buffalo, NY 14263 Progeria International W. Ted Brown, MDINSTITUTE FOR BASIC RESEARCH Registry PhD Department of Human Genetics (718) 494-5333 1050 Forest Hill Road Fax: (718) 474-1026 Staten Island, NY 10314 E-mail: wtbibr@aol.com REGISTRY Director/Telephone Name and Address Sarcoma Registry William Kraybill, MDROSWELL PARK CANCER INSTITUTE (716) 845-5807 Elm & Carlton Streets Fax: (716) 845-3434 Buffalo, NY 14263 Tourette Syndrome Roger Kurlan, MD UNIVERSITY OF ROCHESTER Registry (716) 275-5130 SCHOOL OF MEDICINE Fax: (716) 473-4678Department of Neurology 60l Elmwood Avenue, Box 673 Rochester, NY 14642 Wolfram Syndrome Michael Swift, MDNEW YORK MEDICAL COLLEGE Registry (800) 21-STUDY Department of Pediatrics Fax: (914) 592-2275Division of Human Molecular Administrative Assistant: Genetics Patricia Murphy 4 Skyline Drive Hawthorne, NY 10532 PATIENT/PARENT SUPPORT GROUPS IN GENES An alphabetical listing of syndromes and diseases can be found at the end of this section to make aid locating appropriate support groups. Local chapters are listed after the regional or national office (if applicable) by HSA within NYS (See map in Section A). Web pages and E-mail addresses are listed, but they change often. If one does not work, use your Internet search engine or telephone the group. For a national listing of support groups call the Genetic Alliance at (800) 336-GENE. ALPHA-1 ASSOCIATION NATIONAL OFFICE 8120 Penn Avenue South, Suite 549 Minneapolis, MN 55431 (952) 703-9979/(800) 521-3025 Fax: (952) 703-9977 Web page: www.alpha1.org E-mail: info@alpha1.org Doug Stewart (HSA 2) 100 Mendon Center Road Honeoye Falls, NY 14472 (716) 624-3978 Alice Dunkley (HSA 5) Bartman Road, Box 74 Baker's Mills, NY 12811 (518) 251-2867 (home) (518) 623-3291 (work) ACOUSTIC NEUROMA ASSOCIATION NATIONAL OFFICE 600 Peachtree Parkway, Suite 108 Cumming, GA 30041-6899 (770) 205-8211 Fax: (770) 205-0239 Web page: ANAUSA.org E-mail: ANAusa@aol.com Upstate New York Chapter (HSA 3) Audrey Lee (315) 457-0565 Manhattan Group (HSA 7/Manhattan) Barbara Kristaponis, President 365 West End Avenue, 14C New York, NY 10024 (212) 724-4546 Southern New York State Chapter (HSA 7/Queens) Sheldon Raskin 144-56 27th Avenue Flushing, NY 11354 (718) 762-2244 AMERICAN DIABETES ASSOCIATION NATIONAL OFFICE 1701 North Beauregard Street Alexandria, VA 22311 (800) DIABETES (800) 342-2383 Web page: www.diabetes.org E-mail: customerservice@diabetes.org Western Region 315 Alberta Drive, Suite 102 Amherst, NY 14226 (716) 835-0274 Fax: (716) 835-0283 Eastern Region Joyce Waite, Regional Executive Vice President 149 Madison Avenue, 7th Floor New York, NY 10016 (212) 725-4925 Fax: (212) 725-8916 AMERICAN FOUNDATION FOR THE BLIND Web page: www.afb.org E-mail: afbinfo@afb.net NATIONAL OFFICE 11 Penn Plaza New York, NY 10001 (212) 507-7600 (800) AFB-LINE/(800) 232-5463 AMERICAN LUNG ASSOCIATION Web page: www.lungusa.org American Lung Association of Western New York (HSA 1) 210 John Glenn Drive, #3 Buffalo, NY 14228 (716) 691-LUNG/(716) 691-5864 Fax: (716) 691-5012 E-mail: cschweitzer@alawny.org American Lung Association of the Finger Lakes Region (HSA 2) 1595 Elmwood Avenue, Rochester, NY 14620 (716) 442-4260 Fax: (716) 442-4263 E-mail: alatmp@rochester.rr.com American Lung Association of Central New York (HSA 3) P.O. Box 6409 1620 Burnet Avenue Syracuse, NY 13217 (315) 442-6142 Fax: (315) 422-9710 E-mail: ALAofCNY@aol.com American Lung Association of Mid-New York (HSA 3) 597 Main Street, Suite 109 New York Mills, NY 13417 (315) 736-6099 Fax: (315) 736-5976 E-mail: ALAMCNY@aol.com American Lung Association of New York (HSA 5) 3 Winners Circle, Suite 300 Albany, NY 12205-1187 (518) 453-0172 Fax: (518) 489-5864 E-mail: rarmstrong@alanys.org American Lung Association of the Hudson Valley (HSA 6) 35 Orchard Street White Plains, NY 10603-3397 (914) 949-2150 Fax: (914) 949-4765 E-mail: info@alahv.org American Lung Association of New York (HSA 7) 432 Park Avenue South, 8th Floor New York, NY 10010 (212) 889-3370 Fax: (212) 889-3375 E-mail: info@alany.org American Lung Association of Brooklyn (HSA 7) 175 Remsen Street Brooklyn, NY 11201-1484 (718) 624-8531 Fax: (718) 624-8534 E-mail: CsnyderALAB@aol.com American Lung Association of Queens (HSA 7) 97-45 Queens Boulevard, 11th Floor Rego Park, NY 11374 (718) 263-5656 Fax: (718) 263-6471 E-mail: amakar@alaq.org American Lung Association of Nassau-Suffolk, New York (HSA 8) 97-45 Queens Boulevard, 11th Floor Rego Park, NY 11374 (718) 263-5656 Fax: (718) 263-6471 E-mail: amakar@alaq.org AMERICAN PARKINSON DISEASE ASSOCIATION Web page: www.apdaparkinson.com NATIONAL OFFICE Mary Lee Montalvo 1250 Hylan Boulevard, Suite 4B Staten Island, NY 10305 (800) 223-2732/(718) 981-8001 E-mail: apda@admin.con2.com APDA Southern Tier Chapter Paul I. Pressel, President 321 Fordham Road Vestal, NY 13850 (607) 729-5048 APDA Faye Springer Memorial Rockaway Chapter Marion Manley, President 33 Point Breeze Avenue Breezy Point, NY 11697 (718) 364-1831 APDA New York City Chapter David Eckroth Alfred Mamelony, MD, Co-Presidents c/o APDA I&R Center 345 East 37th Street - Suite 317C New York, NY 10016 (212) 983-1379 APDA New York Young Professionals Chapter Scott Schefrin, President c/o Bear Stearns 245 Park Avenue New York, NY 10167 (212) 272-8280 APDA Salvatore & Elena Esposito Chapter Sophia Maestrone, President 18 St. Julian's Place Staten Island, NY 10301 (718) 727-2713 APDA Nassau County Chapter Jim and Nancy Hall, Co-Presidents 10 Hamilton Square Glen Head, NY 11545-1519 516-671-7619 E-mail: jahall@li.net APDA Suffolk County Chapter Doris Wagner, President c/o St. Catherine of Sienna Hospital 50 Route 25A Smithtown, NY 11787 (631) 862-3560 E-Mail: dee0355@aol.com AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION NATIONAL OFFICE (800) 782-4747 Web page: www.alsa.org Buffalo Self Help Support System (HSA 1) Ann Corhummel (716) 634-5909 E-mail: oceanears@aol.com Upstate New York Free Standing Support Group (HSA 5) Albany, NY (518) 525-1629 E-mail: alsregionalcenter@mercycare.com Greater New York Chapter 116 John Street, Suite 1304 New York, NY 10038 (800) 672-8857 Fax: (212) 619-7409 Web page: als-ny.org E-mail: als@als-ny.org ANENCEPHALY SUPPORT NETWORK NATIONAL OFFICE Web page: asfhelp.com Robin Maier 1010 Nine Acres Lane Mamaroneck, NY 10543 (888) 206-7526/(914) 698-6885 E-mail: asf@asfhelp.com ASSOCIATION FOR CHILDREN WITH DOWN SYNDROME Web page: acds.org NATIONAL OFFICE Helen C. Wilder, Director 4 Fern Place Plainview, NY 10643 (516) 993-4700 Fax: (516) 933-9524 ASSOCIATION FOR GLYCOGEN STORAGE DISEASE NATIONAL OFFICE (319) 785-6038 Web page: www.agsd.org.uk Randy Morgenstern (HSA 2) 95 Rockhill Road Rochester, NY 14618 (716) 473-6036 ASSOCIATION FOR MACULAR DISEASES Web page:www.macula.org/ association/index.html NATIONAL OFFICE Nicholai Stevenson, President 210 East 64th Street New York, NY 10021 (212) 605-3719 Fax: (212) 605-3795 ASSOCIATION OF FAMILIES AND FRIENDS OF CHILDREN WITH LIMB DISORDERS (CHERUB) Kathy Gura (HSA 1) Children's Hospital of Buffalo 936 Delaware Avenue Buffalo, NY 14209 (716) 878-1050/7098 Fax: (716) 888-3990 CAMARY STATEWIDE SERVICES Collette A. Robinson, Chief Executive Director 879 Madison Avenue Albany, NY 12208-3321 (518) 459-1418 Fax: (518) 459-3048 CANAVAN FOUNDATION Website: www.canavanfoundation.org E-mail: Canavandisease@aol.com NATIONAL OFFICE Rosalind Poss Rosen, President 110 Riverside Drive, #4F New York, NY 10024 (212) 873-4640/(877) 4-CANAVAN Fax: (212-665-4788 CAPITAL DISTRICT SICKLE CELL DISEASE FOUNDATION Cheryl Cannon (518) 766-4060 CHARCOT-MARIE-TOOTH ASSOCIATION NATIONAL OFFICE 2700 Chestnut Parkway Chester, PA 19013 (800) 606-CMTA/(610) 499-9264 Fax: (610) 499-9267 Web page: www.charcot.marie.tooth.org E-mail: CMTAssoc@aol.com Chemung County (HSA 2) Angela Piersimoni (607) 502-8823 Westchester County (HSA 6) Kay Flynn 261 Rosedale Road Yonkers, NY 10710 (914) 793-4710 New York City (HSA 7) David Dringer, MD Rusk Institute of Rehabilitative Medicine 40 East 34th Street New York, NY 10016 (212) 535-4314 CHEDIAK-HIGASHI SYNDROME Website: www.medhelp.org/web/hpsn.htm E-mail: hpsnet@worldnet.att.net NATIONAL OFFICE Donna Appell 1 South Road Oyster Bay, NY 11771-1905 (516) 992-3440/(800) 789-9HPS Fax (516) 922-4022 CHILDREN'S PKU NETWORK Virginia M. Crimarco, RN, Regional Coordinator 2991 South Deerfield Avenue Yorktown Heights, NY 10598 Voice/Fax: (914) 962-6163 CLEFT LIP AND PALATE FAMILY (One-on-One support only) Debbie Sturdevant Johnson Hill Road Lisle, NY 13797 (607) 692-4353 COOLEY'S ANEMIA FOUNDATION, INC. Webpage: www.thalassemia.org E-mail: ncaf@aol.com NATIONAL OFFICE Frank Somma, President 129-09 26th Avenue, Suite 203 Flushing, NY 11354-1131 (718) 321-CURE/(800) 522-7222 Fax: (718) 321-3340 Buffalo Chapter (HSA 1) Dennis Locurto, President 135 Wellington Road Buffalo, NY 14216 (716) 834-8903 Westchester County (HSA 6) Peter Chicco (914) 232-1808 Monroe County Chapter (HSA 2) Peter Paradiso, PhD, President 19 Devenwood Lane Pittsford, NY 14534 (716) 234-4931/(716) 248-3385 Brooklyn Chapter (HSA 7/Brooklyn) Terri DiFilippo, President 2136 East 4th Street Brooklyn, NY 11223 (718) 627-7469 Queens (HSA 7/Queens) John Mancino 92-01 Sutter Avenue Ozone Park, NY 11417 (718) 848-6868 Connie Paradiso (516) 747-8447 Suffolk County Chapter (HSA 8) Tony Laurino 738 Smithtown Bypass Smithtown, NY 11787 (631) 863-0532 COOLEY'S ANEMIA INTERNATIONAL, INC. Ronald Capano, President 445 Northern Boulevard Great Neck, NY 11021 (516) 829-5250 Fax: (516) 829-7528 CORNELIA de LANGE SYNDROME NATIONAL OFFICE 302 West Main Street, #100 Avon, CT 06001 (800) 753-2357/(860) 676-8166 Fax (860) 676-8337 Web page: www.cdlsoutreach.org E-mail: info@cdlsusa.org HSA 5 Beth Smisloff 16 Chapman Street Ballson Spa, NY 12020 (518) 885-6573 E-mail: bsmiz@aol.com HSA 6 Susan Leone 124 Manhattan Avenue Hawthorne, NY 10532 (914) 747-3462 E-mail: sueknoisy@aol.com Long Island Chapter (HSA 8) Tina Kirshner 2347 Harrison Avenue Baldwin, NY 11510 (516) 867-1359 CROHN'S AND COLITIS FOUNDATION OF AMERICA, INC. Webpage: www.ccfa.org E-mail: info@ccfa.org NATIONAL OFFICE James Romano, PhD, Chief Executive Director 386 Park Avenue South, 17th Floor New York, NY 10016-7374 (212) 685-3440 Fax: (212) 779-4098 Western New York Chapter (HSA 1) Mike and Donna Kusmierz, Co-Presidents P.O. Box 224 Williamsville, NY 14231-0224 (716) 833-2870 E-mail: WesternNY@ccfa.org Rochester Chapter (HSA 2) Karen Generski, President 1279 Chili Avenue Rochester, NY 14624 (716) 349-4144 Central New York Chapter (HSA 3) Craig Grossman, President 3401 James Street, #1 Syracuse, NY 13206 (877) 352-3621 Binghamton, Southern Tier Chapter (HSA 4) Judy Pflug, President 1981 Settle Road Neward Valley, NY 13811 (617) 642-5124 Capital District Chapter (HSA 5) Linda Winston, Chapter President 4 Normanskill Boulevard Delmar, NY 12054 (518) 439-0252 E-mail: ccfacdc@together.net Fairfield/Westchester Chapter 200 Bloomingdale Road, 2nd Floor White Plains, NY 10605 (914) 328-2874 Fax: (914) 328-2946 Long Island Chapter (HSA 8) Edda Ramsdell, Executive Director 585 Stewart Avenue, Suite 414 Garden City, NY 11530 (516) 222-5530 Fax: (516) 222-5535 E-mail: longisland@ccfa.org CYSTIC FIBROSIS FOUNDATION NATIONAL OFFICE 36931 Arlington Road Bethesda, MD 20814 (800) FIGHT CF/(301) 951-4422 Fax: (301) 951-6378 Web page: www.cff.org E-mail: info@cff.org Western New York Chapter (HSA 1) Dan Kelly Orchard Park, NY 14127 (716) 686-9400 Rochester Chapter (HSA 2) Jo Anne Fournier 301 Exchange Boulevard, Suite 206 Rochester, NY 14608 (716) 546-5890 Web page: www.cff.org/rochester E-mail: rochester@cff.org Central New York Chapter (HSA 3) Denise Fresina 110 Marlborough Road Syracuse, NY 13206 (315) 463-7965/(800) 962-6578 Fax: (315) 463-8221 E-mail: central-ny@cff.org Capital District Chapter (HSA 5) Mary Gordon 50 Colvin Avenue Albany, NY 12206 (518) 489-2677 Fax: (518) 489-2751 Greater New York Chapter (HSA 7/Manhattan) Doris Tulcin 60 East 42nd Street, Suite 1563 New York, NY 10001 (212) 986-8783 Fax: (212) 697-4282 E-mail: greater-ny@cff.org Long Island Office Donna Schneider 420 Jericho Turnpike Jericho, NY 11753 (516) 827-1290 E-mail: long-island@cff.org DEVELOPMENTAL DISABILITIES PREVENTION PROGRAM Erica A. Newson, Health Specialist People, Inc. 1219 North Forest Road P.O. Box 9033 Williamsville, NY 14231-9033 (716) 634-8132 Fax: (716) 633-1709 DOWN SYNDROME - AIM HIGH, INC. Harm Velvis, President (HSA 5) P.O. Box 12624 Albany, NY 12212 (518) 439-3356 Fax: (518) 283-5316 Web page: www.aim-high.org DOWN SYNDROME NETWORK OF CAYUGA COUNTY 21 Dexter Avenue Auburn, NY 13021 (315) 252-6746 THE DYSAUTONOMIA FOUNDATION, INC. NATIONAL OFFICE P.O. Box 211153 Eagan Mills, MN 55121-2553 (651) 267-0525 Fax: (651) 267-0524 Web page: www.ndrf.org Lenore F. Roseman, Executive Director 20 East 46th Street, Room 302 New York, NY 10017 (212) 949-6644 Fax: (212) 682-7625 DYSTONIA MEDICAL RESEARCH FOUNDATION NATIONAL OFFICE One East Wacher Drive, Suite 2430 Chicago, IL 60601-1905 (312) 755-0198 Fax (312) 803-0138 Web page: www.dystonia- foundation.org E-mail: dystonia@dystonia- foundation. org Rita Lo Guidice (HSA 5) 87 Lowell Street Albany, NY 12205 (518) 459-6663 DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH ASSOCIATION OF AMERICA, INC. (DEBRA OF AMERICA) Web page: www.debra.org E-mail: staff@debra.org NATIONAL OFFICE Jean P. Campbell, Executive Director 40 Rector Street, 14th Floor New York, NY 10006 (212) 513-4090 Fax: (212) 513-4099 FANCONI'S ANEMIA RESEARCH FUND SUPPORT INC. NATIONAL OFFICE 1801 Williamette Street Suite 200 Eugene, OR 97401 (541) 687-4658 Web page: www.fanconi.org E-mail: info@fanconi.org Vicki Phillips 476 Ontario Street Albany, NY 12208 (518) 438-1784 FORWARD FACE Web page: www.forwardface.org Kristin Ronelli, Administrative Coordinator 317 East 34th Street, Suite 901A New York, NY 10016 (212) 684-5860 (800) FWD-FACE Fax: (212) 684-5864 FOUNDATION FIGHTING BLINDNESS NATIONAL OFFICE Executive Plaza, Suite 800 11350 McCormick Road Hunt Valley, MD 31031-1014 (888) 394-3937 Web page: www.blindness.org Syracuse Affiliate (HSA 3) John Scala, President 8752 Radburn Drive Baldwinsville, NY 13027 (315) 638-2393 (home) (315) 428-5851 (work) Fax: (315) 428-5983 E-mail: scalaj@nimo.com Bronx-Westchester-Rockland Affiliate (HSA 6) Louise Boardman, President 7 Colvin Road Scarsdale, NY 10583 (914) 472-6644 Fax: (914) 472-4470 Long Island Affiliate (HSA 8) Beatrice E. Samuelson, President 300 Garden City Plaza, Suite 444 Garden City, NY 11530 (516) 294-6666 Manhattan Affiliate (HSA 7) Jacqueline Stein 210 West 90th Street New York, NY 10025 P.O. Box 500B, Grand Central Station New York, NY 10002 (212) 677-6711 Irving Barnett, PhD (HSA 8) 620 Mead Terrace West Hempstead, NY 11550 (516) 485-1947 Mitchell Shapiro (HSA 8) 2 Clearbrook Drive Smithtown, NY 11787-4805 (631) 366-3328 Fax: (631) 360-1998 e-mail: mshapiro@longisland.com FOUNDATION FOR CHILDREN'S GROWTH (MAGIC) NATIONAL OFFICE 1327 North Harlem Avenue Oak Park, IL 60302 (708) 383-0808 Fax: (708) 383-0899 Webpage: magicfoundation.org Cathy Stimmel 37 Forest Avenue Saratoga Springs, NY 12866 (518) 583-2762 E-mail: MagicRSS@aol.com FRAGILE X ASSOCIATION OF NEW YORK, INC. Anita Abraham-Inz 61 Dean Street Brooklyn, NY 11201 (718) 875-4901 E-mail: fragilexny@aol.com FRAGILE X RESOURCE CENTER FOR UPSTATE NEW YORK Susan Lynch 214 Wilbur Boulevard Poughkeepsie, NY 12603 (914) 471-9407 (home) E-mail: gragilexustnyrc@aol.com GENETIC ALLIANCE Website: geneticalliance.org E-mail: info@geneticalliance.org Louise E. Lander, Helpline & Resources Coordinator 4301 Connecticut Avenue, NW, Suite 404 Washington, DC 20008 (202) 966-5557 Fax: (202) 966-8553 GUARDIANS OF HYDROCEPHALUS RESEARCH FOUNDATION Michael Fischetti, Executive Director 2618 Avenue Z Brooklyn, NY 11235 (718) 743-GHRF Fax: (718) 743-1171 E-mail: GHRF2618@aol.com HEART SHARE Fragile X Information, Referral, Support Groups and Training Mia Montgomery, Assistant Director, Family Support Services 186 Joralemon Street Brooklyn, NY 11201 (718) 246-4565 HEMOCHROMATOSIS RESEARCH FOUNDATION Web page: www.hemochromatosis.org NATIONAL OFFICE Margaret Krikker, MD, President P.O. Box 8569 Albany, NY 12208 (518) 489-0972 Fax: (518) 489-0227 HEMOPHILIA ASSOCIATION OF NEW YORK www.web.depot.com/users/hany NATIONAL OFFICE Thom Harrington, Executive Director 104 East 40th Street, Suite 506 New York, NY 10016 (212) 682-5510 Fax: (212) 983-1114 HERMANSKY-PUDLAK SYNDROME NETWORK, INC. Website: www.medhelp.org/web/hpsn.htm E-mail: hpsnet@worldnet.att.net Donna Appell 1 South Road Oyster Bay, NY 11771-1905 (516) 992-3440/(800) 789-9477 Fax (516) 922-4022 HUNTINGTON'S DISEASE SOCIETY OF AMERICA Website: hdsa.mgh.harvard.edu E-mail: curehd@hdsa.ttisms.com NATIONAL OFFICE Maxine Brown, Manager of Family Services and Programs 158 West 29th Street, 7th Floor New York, NY 10011-5300 (800) 345-HDSA/(212) 242-1968 ext. 21 Fax: (212) 239-3430 E-mail: mbrown@hdsa.org Buffalo Area (HSA 1) Donna Guthrie 20 Willowbrook Drive Williamsville, NY 14221 (716) 632-8830 Western New York Area (HSA 1) Alexa Friedrich 189 Bliss Road Westfield, NY 14787 (716) 326-2778 Upstate New York Chapter (HSA 2) Sue Morris 115 Hardwood Lane Rochester, NY 14616 (716) 227-1764 E-mail: mwm115@aol.com Syracuse Area (HSA 3) Kathy Anderson 122 Traister Drive Liverpool, nY 13088 (315) 451-9206 Binghamton Area (HSA 4) 302 Shady Srive Endicott, NY 13760 (607) 757-0959 Jane Benson 85 North Main Street Bainbridge, NY 13733 (617) 967-3011 Albany Area (HSA 5) Donna Bolia 963 State Street Schenectady, NY 12307 (518) 370-1027 Linda Matula 130 Maple Lane Stillwater, NY 12170 (518) 664-7318 IMMUNE DEFICIENCY FOUNDATION NATIONAL OFFICE 40 West Chesapeake Avenue Suite 308 Towson, MD 21204 (800) 296-4433 Fax: (410) 321-9165 Web page: www.primaryimmune.org E-mail: idf@primaryimmune.org Sharon Dobkin (HSA 7/Brooklyn) 1553 East 35th Street Brooklyn, NY 11234 (718) 252-2133 INTERNATIONAL RETT SYNDROME ASSOCIATION NATIONAL OFFICE 9121 Piscataway Road Clinton, MD 20735 (800) 818-RETT/(301) 856-3334 Fax: (301-856-3336 Web page: www.rettsyndrome.org E-mail: irsa@rettsyndrome.org Ro and Joe Vargo 111 Schuler Street Syracuse, NY 13203 (315) 422-7796 Fax: (315) 422-4139 JUVENILE DIABETES FOUNDATION Web page: www.jdf.org NATIONAL OFFICE Shira Kandel Manager of Public Information 120 Wall Street, 19th Floor New York, NY 10005 (800) JDF-CURE/(212) 785-9500 Fax: (212) 785-9595 E-mail: skandel@jdfcure.org Rochester Branch (HSA 2) 277 Alexander Street, Suite 810 Rochester, NY 14607 (716) 546-1390 Fax: (716) 546-1404 Web page: www.jdf.org/chapters/NY/Rochester Juvenile Diabetes Foundation of Central New York (HSA 3) 913 Old Liverpool Road Liverpool, NY 13088-5574 (315) 453-9327 Fax: (315) 423-9355 E-mail: centralnewyork@jdfcure.org Northeastern New York Chapter (HSA 5) 6 Greenwood Drive East Greenbush, NY 12061 (518) 477-2873 Fax: (518) 477-7004 Web page: jdf.org/chapters/NY/Northeastern-NY E-mail: northeastny@jdfcure.org Hudson Valley Chapter (HSA 6) 45 Crown Street Kingston, NY 12401 (845) 331-9888 Fax: (845) 331-9889 Web page: www.jdf.org/chapters/NY/Hudson-Valley E-mail: hudsonvalley@jdfcure.org Southeast New York Chapter (HSA 6) 237 Mamaroneck Avenue White Plains, NY 10605 (914) 686-7700 Fax: (914) 686-7701 E-mail: southeastny@jdfcure.org New York Chapter (HSA 7/Manhattan) 381 Park Avenue South, Suite 507 New York, NY 10016 (212) 689-2860 Fax: (212) 689-4038 Web page: www.jdf.org/NY/city E-mail: newyorkchapter@jdfcure.org Queens Contact (HSA 7/Queens) (718) 478-1594 Staten Island Contact (HSA 7/Staten Island) (718) 727-5325 Long Island Chapter (HSA 8) 85 Marcus Boulevard Hauppauge, NY 11788 (631) 951-9769 Fax: (631) 951-9774 Web page: www.jdfli.org E-mail: longisland@jdfcure.org LAURENCE-MOON-BARDET-BIEDL SYNDROME NETWORK Web page: www.geocities.com/HotSp rings/spa/1761 Sonya H. Coster, Correspondence Secretary 124 Lincoln Avenue Purchase, NY 10577 (914) 251-1163 LITTLE PEOPLE OF AMERICA, INC. NATIONAL OFFICE Box 745 Lubbock, TX 79408 (888) LPA-2001 Web page: www.LPAOnline.org E-mail: LPADataBase@juno.com Finger Lakes (HSA 2) Joseph Olesik 17 Bridlewood Trail Honeoye Falls, NY 14472 (716) 624-8277 Web page: //homestead.juno.com/oleski/PattiO/html E-mail: oleski@bis.kodak.com Mid-Hudson Chapter (HSA 6) Jeanne Waful 15 Meadow Lane Katonah, NY 10536 (914) 232-5934 Alice Higgins 116 Hunt Avenue Pearl River, NY 10965 (845) 732-8364 E-mail: aphigs@aol.com Metropolitan Chapter (HSA 7/Brooklyn) Devorah Fong Rifkind 495 East 16th Street Brooklyn, NY 11226 (718) 826-6230/(718) 240-4548 Barbara Brullo 340 11st Street Brooklyn, NY 11215 (718) 499-5897 Islanders (HSA 8) Joyce Vultaggio 10 Alma Lind Lane Ronkonkoma, NY 11767 (631) 471-3839 E-mail: ladyred128@aol.com LONG ISLAND FRAGILE X ALLIANCE Joe and Geri Gerardi 206 Riviera Parkway Lindenhurst, NY 11757-6117 (631) 225-0065 LOWE'S SYNDROME ASSOCIATION NATIONAL OFFICE 222 Lincoln Street West Lafayette, IN 47906-2732 (765) 743-3634 Web page: www.lowesyndrome.org E-mail: info@lowesyndrome.org Joanne Calvey Upper Lisle Road Whitney Point, NY 13862 (607) 692-4893 MALIGNANT HYPERTHERMIA ASSOCIATION OF THE UNITED STATES Web page: www.mhaus.org E-mail: mhaus@norwich.net NATIONAL OFFICE Josephine Nichols (HSA 3) 32 South Main Street P.O. Box 1069 Sherburne, NY 13460-1069 (607) 674-7901/(800) 644-9737 Fax: (607) 674-7910 MARCH OF DIMES BIRTH DEFECTS FOUNDATION Web page: www.modimes.org NATIONAL OFFICE JoAnn Benson, Executive Director 1275 Mamaroneck Avenue White Plains, NY 10605 (914) 949-7166/(888) MODIMES Fax (914) 997-4744 Western New York Chapter (HSA1) Charleen Sertz, Executive Director 385 North French Road, Suite 100 Buffalo, NY 14228 (716) 691-3805 Fax: (716) 391-0240 E-mail: NY415@modimes.org Genesee Valley/Finger Lakes (HSA 2) Kathy Herring, Division Director 333 Metro Park, Suite 102-S Rochester, NY 14623 (716) 242-3250 Fax: (716) 424-3265 Central New York (HSA 3) Elizabeth Walker, Chair 66 East Church Street Adams, NY 13605 (315) 232-4359 Northeastern New York (HSA 5) Patricia M. Kenney, Division Director 80 Wolf Road Albany, NY 12106 (518) 453-0474 Fax (518) 453-0477 Hudson Valley Division (HSA 6) Catherine Allison, Division Director 22 Freedom Plains Road, Suite 128 Poughkeepsie, NY 12603 (914) 454-8850 Greater New York (HSA 7/Manhattan) Mark Roithmayr, Executive Director 233 Park Avenue South New York, NY 10003 (212) 353-8353 Fax (212) 254-3518 Web page: www.limarchofdimes.org E-mail: NY639@modimes.org Staten Island Division (HSA 7/Staten Island) Frank DeMeo, Associate Executive Director 1173 Forest Avenue Staten Island, NY 10310 (718) 981-3000 Fax (718) 981-4251 Long Island (HSA 8) Annette Kosar, Executive Director 400 Crossways Park Drive Woodbury, NY 11797 (516) 496-2100 Fax (516) 496-2109 Puerto Rico Liz Soza, Executive Director San Jorge Children's Hospital 258 Jorge Street San Juan, PR 00912 (787) 722-4909 Fax: (787) 722-8009 E-mail: PR660@modimes.org MID-HUDSON VALLEY DOWN SYNDROME CONGRESS, INC. Al Marotta 14 Zerner Boulevard Hopewell Junction, NY 12533 (845) 226-1630 Lydia Lemay (518) 822-9373 Laura Carfi (845) 877-9747 ML4 FOUNDATION Web page: www/ml4.org E-mail: www@ml4.org Randy Yudenfriend Glaser, President 719 East 17th Street Brooklyn, NY 11230 (718) 434-5067 MOEBIUS SYNDROME FOUNDATION Web page: www.ciacess.com/moebius E-mail: moebius@ciacess.com NATIONAL OFFICE Kathy Campbell P.O. Box 993 Larchmont, NY 10538 (914) 834-6008 THE MOVEMENT DISORDER SOCIETY NATIONAL OFFICE 611 Wells Street Milwalkee, WI 53202 (414) 276-2145 Fax: (414) 276-2146 Web page: www.movementdisorders.org E-mail: kstanton@movementdisorders.org Stanley Fahn, MD Neurological Institute 710 West 168th Street New York, NY 10032 (212) 305-5277 Fax: (212) 305-1304 MUSCULAR DYSTROPHY ASSOCIATION OF AMERICA NATIONAL OFFICE 3300 East Sunrise Drive Tucson, AZ 85718 (800) 572-1717 Web page: www.mdausa.org Johnita Hairston, Program Services Coordinator (HSA 1) 5500 Main Street, Suite 204 Williamsville, NY 14221 (716) 626-0035 Fax: (716) 626-4229 Parvati Dundee, Patient Services Coordinator (HSA 2) 1210 Jefferson Road Rochester, NY 14623 (716) 424-6560 Fax: (716) 424-1446 Kristin Clogg, Program Service Coordinator (HSA 3) 100 Elwood Davis Road North Syracuse, NY 13212 (315) 451-8269 Fax: (315) 451-4107 Theresa Miller, Program Services Coordinator (HSA 4) 1249 Front Street, Suite 106 Binghamton, NY 13905 (607) 723-7431 Fax: (607) 723-7445 Cathy Clark, Program Services Coordinator (HSA 5) 6 Executive Park P.O. Box 3607 Albany, NY 12203 (518) 489-5495 Fax: (518) 489-6149 HSA 6 220 White Plains Road Tarrytown, NY 10591 (914) 345-5062 HSA 7/Manhattan 10 East 40th Street New York, NY 10016 (212) 679-6215 HSA 8 5 Dakota Drive Lake Success, NY 11042 (516) 358-1012 1363 Veterans Highway Hauppauge, NY 11788 (631) 265-9333 MYELOMENINGOCELE PARENT SUPPORT GROUP Linda Caruso, RN Westchester Institute for Human Development Cedarwood Hall Valhalla, NY 10595-1689 (914) 285-1343 Fax: (914) 493-1343 MYOCLONUS FAMILIES UNITED Sharon Dobkin 1553 East 35th Street Brooklyn, NY 11234 (718) 252-2133 NARCOLEPSY NETWORK NATIONAL OFFICE 10921 Reed Hartman Highway Cincinnati, OH 45242 (513) 891-3522 Fax: (513) 891-3836 Webpage: www.websciences.org/narn et/faq/htm E-mail: narnet@aol.com Niss Ryan P.O. Box 131 Larchmont, NY 10538 (914) 834-2855 NATIONAL ADRENAL DISEASES FOUNDATION Webpage: www.medhelp.org/nadf E-mail: nadfmail@aol.com NATIONAL OFFICE Joyce Mullen 505 Northern Boulevard Great Neck, NY 11021 (516) 487-4992 THE NATIONAL CENTER FOR THE STUDY OF WILSON'S DISEASE, INC. I. Herbert Scheinberg, MD, President 432 West 58th Street New York, NY 10019 (212) 397-4286 NATIONAL DOWN SYNDROME SOCIETY Web page: www.ndss.org E-mail: info@ndss.org NATIONAL OFFICE Myra Madnick, Executive Director 666 Broadway, #810 New York, NY 10012-2317 (212) 460-9330/(800) 221-4602 Fax: (212) 979-2873 NATIONAL FOUNDATION FOR FACIAL RECONSTRUCTION Web page: www.nffr.org E-mail: info@nffr.org NATIONAL OFFICE Whitney Burnett, Executive Director 317 East 34th Street, Room 901 New York, NY 10016 (212) 263-6656/(800) 422-3223 Fax: (212) 263-7534 NATIONAL FOUNDATION FOR JEWISH GENETIC DISEASES Web page: www.nfjgd.org George Crohn, Jr., President 250 Park Avenue, Suite 1000 New York, NY 10177 (212) 371-1030 NATIONAL GAUCHER'S DISEASE FOUNDATION Stuart Berman 1 Jennifer Court North Caldwell, NJ 07006 (973) 812-0071 NATIONAL HEMOPHILIA FOUNDATION Web page: www.hemophilia.org E-mail: info@hemophilia.org NATIONAL OFFICE 116 West 32nd Street New York, NY 10001 (212) 328-3700/(800) 424-2634 Fax: (212) 328-3777 NATIONAL INCONTENTIA PIGMENTI FOUNDATION Web page: www.imgen.bcm.tmc.edu/NIPF E-mail: nipf@pipeline.com Susanne Bross Emmerich, Executive Director 30 East 72nd Street, 16th Floor New York, NY 10021 (212) 452-1231 Fax: (212) 452-1406 NATIONAL KIDNEY FOUNDATION NATIONAL OFFICE Web page: www.kidney.org E-mail: info@kidney.org NATIONAL OFFICE 30 East 33rd Street New York, NY 10016 (212) 889-2210/(800) 622-9010 Fax: (212) 689-9261 Upstate New York (HSA 2) 3300 Monroe Avenue, Suite 100D Fairport, NY 14450 (716) 264-0420/(800) 724-9421 Fax: (716) 264-0109 E-mail: nkf@frontiernet.net Central New York (HSA 3) Gary Cummins 731 James Street, #200 Syracuse, NY 13203 (315) 476-0311 Fax: (315) 476-3707 E-mail: kidneyny@dreamscape.com Northeastern New York (HSA 5) 23 Computer Drive East Albany, NY 12205 (518) 458-9697 Fax: (518) 458-9690 E-mail: nkfneny@crisny.org NATIONAL MARFAN FOUNDATION Website: www.marfan.org E-mail: staff@marfan NATIONAL OFFICE Carolyn Levering, Executive Director 382 Main Street Port Washington, NY 11050 (516) 883-8712/(800) 8-MARFAN Fax: (516) 883-8040 Kathy Schaff (HSA 1) Elma, NY 14059 (716) 652-2631 Kathie Schiefer (HSA 1) East Amhurst, NY 10451 (716) 639-8826 Barbara Shields (HSA 5) 18 Cord Drive latham, NY 12110 (518) 785-9565 E-mail: Barbara765@aol.com Richard Ciacci (HSA 6) New Rochelle, NY 10805 (914) 632-2547 Monica Jacques (HSA 7/Bronx) Bronx, NY (718) 671-7291 Julie Kurnitz (HSA 7/Manhattan) 117 Bank Street New York, NY 10014 (212) 243-0420 E-mail: jkurnitz@aol.com Joseph Gagliano, Jr. (HSA 8) 10 Washington Street Hicksville, NY 11801 (212) 476-8436 (work) (516) 938-3409 (home) Fax: (212) 735-2776 Cheryl Williams (HSA 8) 160 Soper Drive Oceanside, NY 11572 (212) 735-3521 (work) (516) 678-4851 (home) NATIONAL MUCOPOLYSACCHARIDOSIS SOCIETY, INC. NATIONAL OFFICE 102 Aspen Drive Dowingtown, PA 19335 (610) 942-0100 Fax: (610) 942-7188 Web page: www.mpssociety.org E-mail: info@mpssociety.org Marie Capobianco (HSA 8) 17 Kraemer Street Hicksville, NY 11801 (516) 681-9099 Fax: (516) 822-2041 NATIONAL MULTIPLE SCLEROSIS SOCIETY Web page: www.nmss.org E-mail: info@nmss.org NATIONAL OFFICE General Mike Dugan, USAF, retired 733 3rd Avenue, 6th Floor New York, NY 10017 (212) 986-3240/(800) FIGHT MS Fax: (212) 986-7981 Western New York/Northwest Pennsylvania Chapter (HSA 1) Arthur V. Cardella, Chapter President 4245 Union Road, Suite 108 Buffalo, NY 14225 (716) 634-2261 Fax: (716) 634-7979 E-mail: nyw@nmss.org Upstate New York Chapter (HSA 2) James P. Ahearn, Chapter President 1650 South Avenue, Suite 100 Rochester, NY 14620 (716) 271-0801 Fax: (716) 442-2817 Web page: www.msupstateny.org E-mail: nyr@nmss.org Northeastern New York Chapter (HSA 5) Barbara Roland-Milano, Chapter President 9 Columbia Circle Albany, NY 12203 (518) 464-0630 Fax: (518) 464-1232 E-mail: nyc@nmss.org Southern New York Chapter (HSA 6) Ken Mongold, Chapter President 11 Skyline Drive Hawthorne, NY 10532 (914) 345-3500 Fax: (914) 345-3504 Web page: www.fightms.org E-mail: nyv@nmss.org New York City Chapter (HSA 7/Manhattan) Carol M. Keirzy, Chapter President 30 West 26th Street, 9th Floor New York, NY 10010 (212) 463-7787 Fax: (212) 989-4362 Web page: www.msnyc.org E-mail: info@msnyc.org Long Island Chapter (HSA 8) Johanna B. Biederman, Chapter President 200 Parkway Drive South, #101 Hauppauge, NY 11788 (631) 864-8337 Fax: (631) 864-8342 Web page: www.nmssli.org E-mail: nyh@nmss.org NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC. Website: www.nf.org E-mail: nnff@nf.org NATIONAL OFFICE Peter Bellerman, President 95 Pine Street, 16th Floor New York, NY 10005 (212) 344-NNFF/(800) 323-7938 Fax: (212) 747-0004 NATIONAL ORGANIZATION OF RARE DISORDERS (NORD) NATIONAL OFFICE P.O. Box 8923 New Fairfield, CT 06812 (203) 746-6518 Fax: (203) 746-6481 Web page: www.rarediseases.org E-mail: orphan@rarediseases.org No local chapters NATIONAL SELF-HELP CLEARINGHOUSE Web page: www.selfhelpweb.org E-mail: info@selfhelpweb.org NATIONAL OFFICE Frank Riessman, Director CUNY Graduate Center 365 Fifth Avenue, Suite 3300 New York, NY 10016-4309 (212) 817-1822 Fax: (212) 817-2990 NATIONAL TAY-SACHS AND ALLIED DISEASES ASSOCIATION NATIONAL OFFICE 2001 Beacon Street, Suite 204 Brighton, MA 02135 (800) 906-8723 Fax: (617) 277-0134 Web page: www.ntsad.org Email: NTSAD-Boston@worldnet.att.net New York State Chapter Stan Michelman, Marion Yanovsky Co-Presidents 23 Green Street New York, NY 10013 (212) 431-0431 Fax: (Ms. Yanovsky) (914) 354-4847 NYSARC, INC. Web page: www.nysarc.org E-mail: nysarc@nysarc.org Each county has a chapter and office. Contact the statewide office or visit the web page for information. STATEWIDE OFFICE Marc N. Brandt, Executive Director 393 Delaware Avenue Delmar, NY 12054 (518) 439-8311 Fax: (518) 439-1893 THE PAGET FOUNDATION FOR PAGET'S DISEASE OF BONE AND RELATED DISORDERS Web page: www.paget.org E-mail: PagetFdn@aol.com NATIONAL OFFICE Charlene Waldman 120 Wall Street, Suite 1602 New York, NY 10005 (212) 509-5335 Fax: (212) 509-8492 PARENT ASSISTANCE COMMITTEE ON DOWN SYNDROME (PACDS) Ann Majsak 14 Overlook Road White Plains, NY 10605 (914) 328-7909 or 208 Lefayette Avenue Peekskill, NY 10567 (914) 739-4085 PARENT TO PARENT OF NEW YORK STATE Carolyn Schimanski, State Director 500 Balltown Road Schenectady, NY 12304 (518) 381-4350/(800) 305-8817 Fax: (518) 382-1959 PARENTS ACCEPTING THEIR CHILDREN'S HEALTH (PATCH) Brian Hampshire 4549 Broad Road Syracuse, NY 13215-2403 Voice/Fax: (315) 469-3664 E-mail: brianbf@juno.com PARKINSON'S DISEASE FOUNDATION, INC. Lola Sprinzeles, PhD, RN Clinical Nurse Specialist 650 West 168th Street New York, NY 10032-9982 (800) 457-6676/(212) 923-4700 Fax: (212) 723-4778 E-mail: pdfcpmc@aol.com PARKINSON'S SUPPORT GROUP OF SYRACUSE, NY Dale Severance, President 1 Handhewn Way Manlius, NY 13104 (315) 682-3161 Fax: (315) 682-3384 E-mail: dales99846@aol.com PARKINSON'S SUPPORT GROUP OF UPSTATE NEW YORK David Look, President P.O. Box 23204 Rochester, NY 14692 (716) 377-6718 PARKINSON'S WELLNESS GROUP Thomas B. O'Donnell, President 222 Seabert Avenue Depew, NY 14043 (716) 684-6819 coach71395@aol.com PKU ASSOCIATION, INC. Barbara Rowe 72 Windsor Avenue Buffalo, NY 14226 (716) 838-3452 POLYCYSTIC KIDNEY RESEARCH FOUNDATION NATIONAL OFFICE 4901 Main Street, Suite 200 Kansas City, MO 64122-2634 (800) PKD-CURE Fax: (816-931-8655 Web page: www.pkdcure.org E-mail: pkdcure@pkdcure.org Upstate Chapter (HSA 3) Susan Burns 109 Leslee Terrace Syracuse, NY 13219 (315) 487-8429 Long Island Chapter (HSA 8) Gary Krieger 22 Huyler Road Setauket, NY 11733 (631) 751-3965 E-mail: kriegergl@lilco.com PRADER-WILLI ALLIANCE OF NEW YORK, INC. Web page: www.prader-willi.org E-mail: alliance@prader-willi.org Henry Singer, President 366 Oxford Street Rochester, NY 14607 (800) 442-1655 (NYS only) (716) 442-1655 PRADER-WILLI NEW YORK ASSOCIATION, INC. Rita Welch 6-12 160th Street Beechhurst, NY 11357-1326 (718) 767-6077 PROJECT HOPE Jean Giannone 8206 15th Avenue Brooklyn, NY 11228 (718) 331-9006 QUEENS SICKLE CELL ADVOCACY NETWORK PARTNERS IN HEALTH Gloria Rochester 205 Linden Boulevard St. Albans, NY 11412 (718) 712-0873 SICKLE CELL ANEMIA FOUNDATION OF GREATER NEW YORK Beryl Murray, M.S., Executive Director Oberia B. Dempsey Multiservice Center 127 West 127th Street, Room 421 New York, NY 10027 (212) 865-1500 Fax: (212) 865-0917 SICKLE CELL DISEASE ASSOCIATION OF AMERICA NATIONAL OFFICE 200 Corporate Point, Suite 495 Culver City, CA 90230-8727 (800) 421-8453 Web page: sicklecelldisease.org E-mail: scdaa@sicklecelldisease.org Buffalo and Western New York Chapter, Inc. Denise Trotman 2157 Main Street Buffalo, NY 14214 (716) 832-3044 SICKLE CELL DISEASE PARENT ASSOCIATION, INC. Patricia Perkins, Treasurer 3 West Toulon Drive Cheektowaga, NY 14227 (716) 668-3206 (716) 668-9511 ext. 35 (days) SICKLE CELL DISEASE PARENT'S SUPPORT GROUP Myrta da Silva, MSW The Brooklyn Hospital Center 121 DeKalb Avenue Brooklyn, NY 11201 (718) 250-6074 Fax: (718) 250-6518 SICKLE CELL FAMILY GROUP Howard Forbes, MSW Harlem Hospital Center 506 Lenox Avenue New York, NY 10037 (212) 939-1707 Fax: (212) 939-1692 SICKLE CELL ORGANIZATION FOR SELF HELP (SCOSH) Pamela Hayward, President Columbia-Presbyterian Medical Center 630 West 168th Street New York, NY 10032 (212) 305-5808 SICKLE CELL/THALASSEMIA SUPPORT GROUP (SCORE) Rita Bellevue, MD Denise Blair New York Methodist Hospital 506 Sixth Street Brooklyn, NY 11215 (718) 857-5643 SJOGREN'S SYNDROME FOUNDATION, INC. Web page: www.sjogrens.org E-mail: ssf@sjogrens.org NATIONAL OFFICE Alexis Stegemann, Executive Director 333 North Broadway, Suite 2000 Jericho, NY 11753-2007 (516) 933-6365/(800) 475-6436 Fax: (516) 933-6368 SPINA BIFIDA ASSOCIATION NATIONAL OFFICE 4590 MacArthur Boulevard, NW Suite 250 Washington, DC 20007-4226 (800) 621-3141/(202) 944-3285 Fax (202) 944-3295 Web page: www.sbaa.org E-mail: sbaa@sbaa.org SBA of Western New York (HSA 1) P.O. Box 50 Williamsville, NY 14231-0050 (716) 446-5595 Fax: (716) 735-7561 E-mail: slack@pcom.net Greater Rochester SBA (HSA 2) P.O. Box 3 Fairport, NY 14450 (716) 381-5471 Fax: (716) 381-2008 E-mail: Rdell1@aol.com SBA of Albany/Capital District (HSA 5) Christine Darby 109 Spring Road Scotia, NY 12302 (518) 399-9151 E-mail: Rexdar109@aol.com SBA of Nassau County (HSA 8) 218 White Avenue New Hyde Park, NY 11040 (516) 354-4837 E-mail: ad4pta@aol.com SUPPORT GROUP FOR MONOSOMY 9p Noreen and Joseph Santa Maria 47 Kelly Avenue Albany, NY 12203 (518) 456-3582 SUPPORT ORGANIZATION FOR TRISOMY 18/13 (SOFT) Web page: www.trisomy.org Barbara van Herreweghe (HSA 2) 2982 South Union Street North Chili, NY 14514 (716) 594-4621/(800) 716-SOFT E-mail: barbsoft@aol.com Jo and Mark Kandel (HSA 1) P.O. Box 93 Chaffee, NY 14030 (716) 496-5658 E-mail: jkandel@pioneernet.wnyric.org Linda and Bob Ely (HSA 3) 63 Artillery Lane Baldwinsville, NY 13027 (315) 635-6900 Amy Bona (HSA 7/Brooklyn) 1116 Ditmas Avenue Brooklyn, NY 11218 (718) 284-5244 THALASSEMIA ACTION GROUP Webpage: www.thalassemia.org/tag1.htm Gargi Pahuja, Director, Patient Services 129-29 26th Avenue, Suite 203 Flushing, NY 11354 (800) 522-7222 (718) 321-2873 Fax (718) 321-3340 TOURETTE SYNDROME ASSOCIATION, INC. Web page: tsa-usa.org E-mail: ts@tsa-usa.org NATIONAL OFFICE Sue Levi-Pearl Director, Scientific and Medical Programs 42-40 Bell Boulevard, Suite 205 Bayside, NY 11361-2820 (718) 224-2999/(800) 237-0717 Fax: (718) 279-9596 E-mail: slevipearl@delphi.com Western New York Chapter (HSA 1) Susan Conners, President 20 Thomas Jefferson Lane Snyder, NY 14226 (716) 839-4430 (evenings) Greater Rochester Chapter (HSA 2) Susan Allen, President 573 List Avenue Rochester, NY 14617 (716) 987-5196 E-mail: tsagrny@aol.com Northern New York Chapter (HSA 5) Diane Hamilton P.O. Box 12203 Albany, NY 12212-2203 (518) 489-7720 E-mail: northnytsa@aol.com Dutchess/Ulster County Chapter (HSA 6) Nancy Rosen, Area Representative P.O. Box 54 Esopus, NY 12429 (845) 384-6495 Fax: (845) 684-6920 E-mail: nrosen@ulster.net New York City Chapter (HSA 7/Brooklyn) David Grupper, President 345 Westminster Road Brooklyn, NY 11218 (718) 282-9233 E-mail: TSANYCW@aol.com Long Island Chapter (HSA 8) Leslie Packer, PhD, President 8 Simpson Place Stony Brook, NY 11790 (718) 224-4674 TURNER'S SYNDROME SOCIETY NATIONAL OFFICE 14450 TC Jester, Suite 260 Houston, TX 77014 (800) 365-9944 Fax: (832) 249-9987 Web page: www.turner-syndrome- us.org E-mail: webmaster@turner- syndrome-us.org Central New York Chapter (HSA 3) Ann Reynolds 823 Gwen Lane Cortland, NY 13045 (607) 756-4376 Upper New York Chapter (HSA 5) Debra Curry 2B Sylvan Trail Ballston Lake, NY 12019-9006 (518) 899-0081 E-mail: curryda@aol.com UNITED CEREBRAL PALSY ASSOCIATION OF NEW YORK STATE Web page: www.ucpa-nys.org There are 23 chapters and 2 divisions in NYS. Contact the statewide office or visit the web page for information. STATEWIDE OFFICE 90 State Street, Suite 929 Albany, NY 12207 (518) 436-0178 VELO-CARDIO-FACIAL SYNDROME EDUCATIONAL FOUNDATION Web page: vcfsef.org E-mail: vcfsef@hscsyr.edu NATIONAL OFFICE Robert J. Shprintzen, PhD, Executive Director SUNY Upstate Medical Center 708 Jacobsen Hall 750 East Adams Street Syracuse, NY 13210 (315) 464-6590 Fax: (315) 464-6593 VON HIPPEL-LINDAU (VHL) FAMILY ALLIANCE NATIONAL OFFICE 171 Clinton Road Brookline, MA 02146 (800) 676-4VHL/(617) 232-5946 Fax: (617) 734-8233 Web page: www.vhl.org E-mail: info@vhl.org Altheada Johnson (HSA 7/Brooklyn) 380 Adelphi Street Brooklyn, NY 11238 Voice/Fax:(718) 622-2457 E-mail: altheada@pipeline.com WE MOVE (WORLDWIDE EDUCATION AND AWARENESS FOR MOVEMENT DISORDERS) Web page: www.wemove.org E-mail: wemove@wemove.org Judith Blazer, MS, Executive Director The Mount Sinai Medical Center, Box 1052 One Gustave L. Levy Place New York, NY 10029 (800) 437-MOV2 XERODERMA PIGMENTOSUM SOCIETY Web page: xps.org E-mail: caren@xps.org Caren J. Mahar Box 4759 Poughkeepsie, NY 12601 Voice/Fax: (914) 473-4735 LIST OF DISORDERS AND ASSOCIATED SUPPORT GROUPS -1 Anti Trypsin ALPHA-1 ASSOCIATION Acoustic Neuroma ACOUSTIC NEUROMA ASSOCIATION Adrenal Diseases NATIONAL ADRENAL DISEASES FOUNDATION Albinism HERMANSKY-PUDLAK SYNDROME NETWORK, INC. All conditions CAMARY STATEWIDE SERVICES GENETIC ALLIANCE MARCH OF DIMES BIRTH DEFECTS FOUNDATION NATIONAL ORGANIZATION OF RARE DISORDERS (NORD) NATIONAL SELF-HELP CLEARINGHOUSE PARENT TO PARENT OF NEW YORK STATE PARENTS ACCEPTING THEIR CHILDREN'S HEALTH (PATCH) PROJECT HOPE Amyotrophic Lateral Sclerosis AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION Anencephaly ANENCEPHALY SUPPORT NETWORK Bleeding Disorders HEMOPHILIA ASSOCIATION OF NEW YORK HERMANSKY-PUDLAK SYNDROME NETWORK, INC. NATIONAL HEMOPHILIA FOUNDATION Blindness AMERICAN FOUNDATION FOR THE BLIND ASSOCIATION FOR MACULAR DISEASES FOUNDATION FIGHTING BLINDNESS HERMANSKY-PUDLAK SYNDROME NETWORK, INC. Bone Disorders THE PAGET FOUNDATION FOR PAGET'S DISEASE OF BONE AND RELATED DISORDERS Canavan Disease CANAVAN FOUNDATION Cardiac Disorders VELO-CARDIO-FACIAL SYNDROME EDUCATIONAL FOUNDATION Cerebral Palsy UNITED CEREBRAL PALSY ASSOCIATION OF NEW YORK STATE Charcot-Marie-Tooth CHARCOT-MARIE-TOOTH ASSOCIATION Chediak-Higashi CHEDIAK-HIGASHI SYNDROME Chromosome Abnormalities ASSOCIATION FOR CHILDREN WITH DOWN SYNDROME DOWN SYNDROME - AIM HIGH, INC. DOWN SYNDROME NETWORK OF CAYUGA COUNTY FRAGILE X ASSOCIATION OF NEW YORK, INC FRAGILE X RESOURCE CENTER FOR UPSTATE NEW YORK HEART SHARE LONG ISLAND FRAGILE X ALLIANCE MID-HUDSON VALLEY DOWN SYNDROME CONGRESS, INC. NATIONAL DOWN SYNDROME SOCIETY PARENT ASSISTANCE COMMITTEE ON DOWN SYNDROME PARENT ASSISTANCE COMMITTEE ON DOWN SYNDROME (PACDS) SUPPORT GROUP FOR MONOSOMY 9p SUPPORT ORGANIZATION FOR TRISOMY 18/13 (SOFT) TURNER'S SYNDROME SOCIETY Cleft Lip/Cleft Palate CLEFT LIP AND PALATE FAMILY FORWARD FACE VELO-CARDIO-FACIAL SYNDROME EDUCATIONAL FOUNDATION Coagulation Disorders HEMOPHILIA ASSOCIATION OF NEW YORK NATIONAL HEMOPHILIA FOUNDATION Colitis CROHN'S AND COLITIS FOUNDATION OF AMERICA, INC. Cooley's Anemia COOLEY'S ANEMIA FOUNDATION, INC. COOLEY'S ANEMIA INTERNATIONAL, INC. Cornelia de Lange CORNELIA de LANGE SYNDROME Craniofacial Disorders CLEFT LIP AND PALATE FAMILY FORWARD FACE MOEBIUS SYNDROME FOUNDATION NATIONAL FOUNDATION FOR FACIAL RECONSTRUCTION VELO-CARDIO-FACIAL SYNDROME EDUCATIONAL FOUNDATION Crohn's Disease CROHN'S AND COLITIS FOUNDATION OF AMERICA, INC. Cystic Fibrosis CYSTIC FIBROSIS FOUNDATION Developmental Disabilities ASSOCIATION FOR CHILDREN WITH DOWN SYNDROME DEVELOPMENTAL DISABILITIES PREVENTION PROGRAM DOWN SYNDROME - AIM HIGH, INC. DOWN SYNDROME NETWORK OF CAYUGA COUNTY FRAGILE X ASSOCIATION OF NEW YORK, INC. FRAGILE X RESOURCE CENTER FOR UPSTATE NEW YORK HEART SHARE LONG ISLAND FRAGILE X ALLIANCE MID-HUDSON VALLEY DOWN SYNDROME CONGRESS, INC. NATIONAL DOWN SYNDROME SOCIETY NYSARC, INC. PARENT ASSISTANCE COMMITTEE ON DOWN SYNDROME PARENT ASSISTANCE COMMITTEE ON DOWN SYNDROME (PACDS) Diabetes AMERICAN DIABETES ASSOCIATION JUVENILE DIABETES FOUNDATION Down Syndrome ASSOCIATION FOR CHILDREN WITH DOWN SYNDROME DOWN SYNDROME - AIM HIGH, INC. DOWN SYNDROME NETWORK OF CAYUGA COUNTY MID-HUDSON VALLEY DOWN SYNDROME CONGRESS, INC. NATIONAL DOWN SYNDROME SOCIETY PARENT ASSISTANCE COMMITTEE ON DOWN SYNDROME PARENT ASSISTANCE COMMITTEE ON DOWN SYNDROME (PACDS) Dysautonomia THE DYSAUTONOMIA FOUNDATION, INC. Dystonia DYSTONIA MEDICAL RESEARCH FOUNDATION ASSOCIATION OF AMERICA, INC. (DEBRA OF AMERICA) Dystrophic Epidermolysis Bullosa DYSTROPHIC EPIDERMOLYSIS BULLOSA RESEARCH Fanconi's Anemia FANCONI'S ANEMIA RESEARCH FUND SUPPORT INC. Fragile X FRAGILE X ASSOCIATION OF NEW YORK, INC. FRAGILE X ASSOCIATION OF NEW YORK, INC. HEART SHARE LONG ISLAND FRAGILE X ALLIANCE Gaucher's Disease NATIONAL GAUCHER'S DISEASE FOUNDATION Glycogen Storage Disease ASSOCIATION FOR GLYCOGEN STORAGE DISEASE Growth Disorders FOUNDATION FOR CHILDREN'S GROWTH (MAGIC) LITTLE PEOPLE OF AMERICA, INC. Hemochromatosis HEMOCHROMATOSIS RESEARCH FOUNDATION Hemoglobinopathies CAPITAL DISTRICT SICKLE CELL DISEASE FOUNDATION COOLEY'S ANEMIA FOUNDATION, INC. COOLEY'S ANEMIA INTERNATIONAL, INC. QUEENS SICKLE CELL ADVOCACY NETWORK PARTNERS IN HEALTH SICKLE CELL ANEMIA FOUNDATION OF GREATER NEW YORK SICKLE CELL DISEASE ASSOCIATION OF AMERICA SICKLE CELL DISEASE PARENT ASSOCIATION, INC. SICKLE CELL DISEASE PARENT'S SUPPORT GROUP SICKLE CELL FAMILY GROUP SICKLE CELL ORGANIZATION FOR SELF HELP (SCOSH) SICKLE CELL/THALASSEMIA SUPPORT GROUP (SCORE) THALASSEMIA ACTION GROUP Hemophilia HEMOPHILIA ASSOCIATION OF NEW YORK NATIONAL HEMOPHILIA FOUNDATION Hermansky-Pudlak Syndrome HERMANSKY-PUDLAK SYNDROME NETWORK, INC. Huntington's Disease HUNTINGTON'S DISEASE SOCIETY OF AMERICA Hydrocephalus GUARDIANS OF HYDROCEPHALUS RESEARCH FOUNDATION Hyperthermia MALIGNANT HYPERTHERMIA ASSOCIATION OF THE UNITED STATES Immune Deficiency Disorders CHEDIAK-HIGASHI SYNDROME IMMUNE DEFICIENCY FOUNDATION Incontentia Pigmenti NATIONAL INCONTENTIA PIGMENTI FOUNDATION Jewish Genetic Diseases CANAVAN FOUNDATION NATIONAL FOUNDATION FOR JEWISH GENETIC DISEASES NATIONAL GAUCHER'S DISEASE FOUNDATION NATIONAL TAY-SACHS AND ALLIED DISEASES ASSOCIATION Kidney Disease NATIONAL KIDNEY FOUNDATION POLYCYSTIC KIDNEY RESEARCH FOUNDATION Laurence-Moon-Bardet-Biedl Syndrome LAURENCE-MOON-BARDET-BIEDL SYNDROME NETWORK Limb Disorders ASSOCIATION OF FAMILIES AND FRIENDS OF CHILDREN WITH LIMB DISORDERS (CHERUB) Lowe's Syndrome LOWE'S SYNDROME ASSOCIATION Lung Disorders AMERICAN LUNG ASSOCIATION CYSTIC FIBROSIS FOUNDATION HERMANSKY-PUDLAK SYNDROME NETWORK, INC. Macular Disease ASSOCIATION FOR MACULAR DISEASES Malignant Hyperthermia MALIGNANT HYPERTHERMIA ASSOCIATION OF THE UNITED STATES Marfan Syndrome NATIONAL MARFAN FOUNDATION Metabolic Disorders AMERICAN DIABETES ASSOCIATION ASSOCIATION FOR GLYCOGEN STORAGE DISEASE CANAVAN FOUNDATION CHILDREN'S PKU NETWORK CYSTIC FIBROSIS FOUNDATION JUVENILE DIABETES FOUNDATION ML4 FOUNDATION NATIONAL MUCOPOLYSACCHARIDOSIS SOCIETY, INC. PKU ASSOCIATION, INC. ML4 ML4 FOUNDATION Moebius Syndrome MOEBIUS SYNDROME FOUNDATION Monosomy 9p SUPPORT GROUP FOR MONOSOMY 9p Movement Disorders AMERICAN PARKINSON DISEASE ASSOCIATION THE MOVEMENT DISORDER SOCIETY NATIONAL MULTIPLE SCLEROSIS SOCIETY PARKINSON'S DISEASE FOUNDATION, INC. PARKINSON'S SUPPORT GROUP OF SYRACUSE, NY PARKINSON'S SUPPORT GROUP OF UPSTATE NEW YORK PARKINSON'S WELLNESS GROUP UNITED CEREBRAL PALSY ASSOCIATION OF NEW YORK STATE WE MOVE (WORLDWIDE EDUCATION AND AWARENESS FOR MOVEMENT DISORDERS) Mucolipidosis ML4 FOUNDATION Mucopolysaccharidosis NATIONAL MUCOPOLYSACCHARIDOSIS SOCIETY, INC. Multiple Sclerosis NATIONAL MULTIPLE SCLEROSIS SOCIETY Muscular Dystrophy AMYOTROPHIC LATERAL SCLEROSIS ASSOCIATION MUSCULAR DYSTROPHY ASSOCIATION OF AMERICA Myelomeningocele MYELOMENINGOCELE PARENT SUPPORT GROUP Myoclonus MYOCLONUS FAMILIES UNITED Narcolepsy NARCOLEPSY NETWORK Neurofibromatosis NATIONAL NEUROFIBROMATOSIS FOUNDATION, INC. Neural Tube Defects ANENCEPHALY SUPPORT NETWORK GUARDIANS OF HYDROCEPHALUS RESEARCH FOUNDATION MYELOMENINGOCELE PARENT SUPPORT GROUP SPINA BIFIDA ASSOCIATION Paget's Disease THE PAGET FOUNDATION FOR PAGET'S DISEASE OF BONE AND RELATED DISORDERS Parkinson Disease AMERICAN PARKINSON DISEASE ASSOCIATION PARKINSON'S DISEASE FOUNDATION, INC. PARKINSON'S SUPPORT GROUP OF SYRACUSE, NY PARKINSON'S SUPPORT GROUP OF UPSTATE NEW YORK PARKINSON'S WELLNESS GROUP Phenylketonuria CHILDREN'S PKU NETWORK PKU ASSOCIATION, INC. Polycystic Kidney Disease POLYCYSTIC KIDNEY RESEARCH FOUNDATION Prader-Willi Syndrome PRADER-WILLI ALLIANCE OF NEW YORK, INC. PRADER-WILLI NEW YORK ASSOCIATION, INC. Retinitis Pigmentosa FOUNDATION FIGHTING BLINDNESS Rett Syndrome INTERNATIONAL RETT SYNDROME ASSOCIATION Sickle Cell Disease CAPITAL DISTRICT SICKLE CELL DISEASE FOUNDATION QUEENS SICKLE CELL ADVOCACY NETWORK PARTNERS IN HEALTH SICKLE CELL ANEMIA FOUNDATION OF GREATER NEW YORK SICKLE CELL DISEASE ASSOCIATION OF AMERICA SICKLE CELL DISEASE PARENT ASSOCIATION, INC. SICKLE CELL DISEASE PARENT'S SUPPORT GROUP SICKLE CELL FAMILY GROUP SICKLE CELL ORGANIZATION FOR SELF HELP (SCOSH) SICKLE CELL/THALASSEMIA SUPPORT GROUP (SCORE) Sjogren's Syndrome SJOGREN'S SYNDROME FOUNDATION, INC. Sleep Disorders NARCOLEPSY NETWORK Spina Bifida SPINA BIFIDA ASSOCIATION Tay-Sachs NATIONAL TAY-SACHS AND ALLIED DISEASES Thalassemias COOLEY'S ANEMIA FOUNDATION, INC. COOLEY'S ANEMIA INTERNATIONAL, INC. THALASSEMIA ACTION GROUP Tourette Syndrome TOURETTE SYNDROME ASSOCIATION, INC. Trisomy 18/13 SUPPORT ORGANIZATION FOR TRISOMY 18/13 Turner's Syndrome TURNER'S SYNDROME SOCIETY Vision Disabilities AMERICAN FOUNDATION FOR THE BLIND ASSOCIATION FOR MACULAR DISEASES FOUNDATION FIGHTING BLINDNESS HERMANSKY-PUDLAK SYNDROME NETWORK, INC. Velo-Cardio-Facial Syndrome VELO-CARDIO-FACIAL SYNDROME EDUCATIONAL FOUNDATION von Hippel-Lindau Syndrome VON HIPPEL-LINDAU (VHL) FAMILY ALLIANCE Wilson's Disease THE NATIONAL CENTER FOR THE STUDY OF WILSON'S DISEASE, INC. Xeroderma Pigmentosum XERODERMA PIGMENTOSUM SOCIETY GENES Directory 2001 INDEX OF INDIVIDUALS Name InstitutionSection(s)/Page(s) Abraham-Inz, Anita . . . Fragile X Association of New York . . U13 Adcock, Dorothy, MD. . . Esoterix Coagulation. . . . . . . . . F16 Ahearn, James P. . . . . National Multiple Sclerosis Society . U25 Allan, Suzanna, MS . . . North Shore Long Island Jewish Medical CenterC51 Allen, Elizabeth F, PhD. Fletcher Allen Health Care. . . . . . .E7 Allen, Howard, PhD, MSW Roswell Park Cancer Institute . . . . .H3 Allen, Steven L, MD. . . North Shore University Hospital . . . .J2 Allen, Susan . . . . . . Tourette Syndrome Association . . . . U32 Allison, Catherine . . . March of Dimes Birth Defects FoundationU19 Allitto, Bernice, PhD. . Genzyme Genetics. . . . . . . . . . . F16 Alonso, M Lita, MD . . . The New York Hospital-Cornell Medical CenterD18, E4, S2 Amberson, James B, MD. . Dianon Systems, Inc . . . . . . . . . F15 Amsterdam, Daniel, PhD . Erie County Medical Center. . . . . . .P3 Anbar, Ran, MD . . . . . SUNY Upstate Medical University . . . .I1 Anderson, Garth, MD. . . Roswell Park Cancer Institute . . . . .H2 Anderson, Kathy. . . . . Huntington's Disease Society of AmericaU15 Anderson, Lowell, T, PhD New York University Medical Center. . .T3 Angulo, Moris, MD. . . . Winthrop University Hospital. . . . . C61 Anhalt, Henry, DO. . . . Maimonides Medical Center . . . . . . .L2 Antonelli, Jenna, MS . . North Shore Long Island Jewish Medical CenterC51 Anyane-Yeboa, Kwame, MD. New York Presbyterian Hospital. . . . C43 Anyane-Yeboa, Kwame, MD. St. Luke's-Roosevelt Hospital Center. C45 Anyane-Yeboa, Kwame, MD. St. Mary's Hospital for Children. . . D24 Anyane-Yeboa, Kwame, MD. Winthrop University Hospital. . . . . C61 Appell, Donna. . . . . . Chediak-Higashi Syndrome. . . . . . . .U7 Appell, Donna. . . . . . Hermansky-Pudlak Syndrome . . . . . . U14 Arnold, Georgianne, MD.. Strong Memorial Hospital. . . . . . . .M1 Arnold, Georgianne, MD.. University of Rochester School of MedicineC7 Arvan, Dean A, MD. . . . University of Rochester/Strong Memorial HospitalG3 Ashwood, Edward, MD. . . Associated Regional and University Pathologists, IncG5 Astin, Deirdre . . . . . New York State Department of HealthE1, F4, G1 Atlas, Mark P, MD. . . . Winthrop University Hospital. . . . . P45 Auerbach, Arleen D, PhD. The New York Hospital-Cornell Medical CenterD18 Auerbach, Arleen D, PhD. The Rockefeller University HospitalE5, F14, T3 AvRuskin, Theodore W, MD Brookdale Hospital Medical Center . . .L2 Azuala, Melissa, MD. . . Children's Hospital of Buffalo. . . . .C3 Babu, Arvind, PhD. . . . Wyckoff Heights Medical Center. . . . .E4 Bank, Arthur, MD . . . . Columbia-Presbyterian Medical Center. P26 Barnett, Irving, PhD . . Foundation Fighting Blindness . . . . U13 Barnoski, Barry, PhD . . Genzyme Genetics. . . . . . . . . . . .D4 Baron, Miron, MD . . . . New York State Psychiatric Institute. D20 Barrett, Shannon, MS . . Maimonides Medical Center . . . . . . C25 Bastan, William, MD. . . SUNY Downstate Medical Center . . . . .L2 Batra, Shivani, MS . . . Mount Sinai Medical Center. . . . . . C36 Batten, Joan, RN . . . . Mount Sinai Medical Center. . . . . . .N2 Baum, Robin, MS. . . . . Memorial Hospital-Sloan Kettering Cancer CenterH10 Bayen, Phyllis, RN . . . SUNY Upstate Medical University . . . .P6 Beaverson, Katherine, MS The New York Hospital-Cornell Medical CenterD17 Belfort, Marlene, PhD. . New York State Department of Health . .B1 Beller, Eva, MS. . . . . SUNY Downstate Medical Center . . D12, S2 Bellerman, Peter . . . . National Neurofibromatosis Foundation U26 Bellevue, Rita, MD . . . New York Methodist Hospital . . .C27, P22 Bellevue, Rita, MD . . . Sickle Cell/Thalassemia Patient CommitteeU30 Bellisario, Ronald, PhD. New York State Department of Health . .B2 Ben-Yishay, Myrna, MS. . Montefiore Medical Center . . . . . . C22 Bender, Adam N, MD . . . Mount Sinai Medical Center. . . . . . .N2 Benson, Jane . . . . . . Huntington's Disease Society of AmericaU15 Benson JoAnn . . . . . . March of Dimes Birth Defects FoundationU19 Berdella, Maria, MD. . . Saint Vincent Catholic Medical Centers of New YorkI2 Berninger, John. . . . . New York State Department of Health . .B2 Berkwits, Frances, MS. . Dor Yeshorim. . . . . . . . . . . . . .D8 Berliner, Janice, MS . . Institute for Basic Research. . . . . H14 Berman, Stuart . . . . . National Gaucher's Disease Foundation U23 Bernstein, Zale P, MD. . Hemophilia Center of Western New York .K1 Bertagnolli, Monica M, MD . . The Strang Cancer Prevention ProgramT2 Bertagnolli, Monica M, MD . . New York Hospital-Cornell Medical CenterT2 Bhatt, Sucheta, MD . . . Genzyme Genetics. . . . . . . . . . . .D4 Bialer, Martin, MD, PhD. North Shore University Hospital .D27, H16 Bick, David P. MD. . . . Genetics & IVF Institute. . . . . . . F16 Biederman, Johanna B . . National Multiple Sclerosis Society . U26 Billett, Henny, MD . . . Albert Einstein College of Medicine . P11 Blackwood, Miren . . . . Interfaith Medical Center . . . . . . P20 Blair, Denise . . . . . Sickle Cell/Thalassemia Patient CommitteeU30 Blakely Eileen, RD.. . . University of Rochester School of MedicineC7 Blattner, Peggy, MS. . . . . . . . . . . . . . . . . . . . . . .D2 Blazer, Judith, MS . . . We Move . . . . . . . . . . . . . . . U33 Block, AnneMarie, PhD. . Roswell Park Memorial Institute . .E2, H3 Blumberg, Denise, MD . . Nassau County Medical Center. . . . . .L3 Blumenthal, Donna, MS. . North Shore Long Island Jewish Medical CenterC51, H15 Boardman, Louise . . . . Foundation Fighting Blindness . . . . U12 Bock, Jay, MD, PhD . . . SUNY at Stony Brook . . . . . . . . . .G4 Bolia, Donna . . . . . . Huntington's Disease Society of AmericaU15 Bona, Amy. . . . . . . . SOFT. . . . . . . . . . . . . . . . . U31 Bonforte, Richard J, MD. Mount Sinai Medical Center. . . . . . .I2 Bontempo, Franklin A, MD ITxM Diagnostics, Inc . . . . . . . . F16 Borges, Mirna, MD. . . . Ponce School of Medicine. . . . . . . D30 Borowitz, Drucy, MD. . . Children's Hospital of Buffalo. . . . .I1 Borsuk, Jill, MS . . . . New York University Medical Center. . C39 Braddock, Bonnie, MS . . SUNY Upstate Medical University . C11, H5 Bradley, Linda, PhD. . . Clinigene Medical Specialty LaboratoryF14, G4 Brandt, Marc N . . . . . NYSARC, Inc . . . . . . . . . . . . . U27 Brecher, Martin L, MD. . Children's Hospital of Buffalo. . . . .J1 Brenholz, Pauline, MD. . Phelps Memorial Hospital Center . . . .D6 Brooks, Susan Sklower, MD . . Institute for Basic Research C55, S2 Brooks, Susan Sklower, MD . . Staten Island University HospitalD22 Broome, John D, MD . . . North Shore University Hospital . . . F14 Brown, Karen, MS . . . . Mount Sinai Medical Center. . . . C36, S2 Brown, Maxine. . . . . . Huntington's Disease Local Contacts . U14 Brown, Stephen A, MD . . New York Presbyterian Hospital. . . . C43 Brown, Stephen A, MD . . Columbia University . . . . . . . . . F12 Brown, W Ted, MD, PhD. . Institute for Basic Research. . . C55, T3 Brullo, Barbara. . . . . Little People of America. . . . . . . U18 Bryan, Sean N, MS. . . . The Genetics Center . . . . . . . . . D26 Buchanan, Philip D, PhD. Genecare. . . . . . . . . . . . . . . .E7 Burkart, Peter, MD . . . Albany Medical Center . . . . . . . . .K1 Burke, Robert D, MD. . . Albert Einstein College of Medicine . .H8 Burke, Robert D, MD. . . White Plains Hospital . . . . . . . . .H7 Burke, M Desmond, MD . . The New York Hospital-Cornell Medical CenterF13, G4 Burnette, Whitney. . . . National Foundation for Facial ReconstructionU23 Burns, Jacqueline, PhD . Danbury Hospital. . . . . . . . . . . .E6 Burns, Susan . . . . . . Polycystic Kidney Research Foundation U28 Buttice, Linda, MS . . . SUNY at Stony Brook . . . . . . . . . C59 Bylund, David J, MD. . . Scripps Reference Laboratory. . . . . F17 Cabbad, Michael F, MD. . The Brooklyn Hospital Center. . . . . C23 Caggana, Michele, ScD. . New York State Department of HealthF3, F4 Caine, Erin, MS. . . . . New York Presbyterian Hospital. . . . C43 Calvey, Joanne . . . . . Lowe's Syndrome Association . . . . . U18 Campbell, Cecelia, MS. . Harlem Hospital Center. . . . . . . . C31 Campbell, Jean P . . . . Dystrophic Epidermolysis Bullosa Research AssociationU12 Campbell, Kathy. . . . . Moebius Syndrome Foundation . . . . . U20 Campbell-Grumett, Sherry, MS. Mount Sinai Medical Center . . . C36 Canick, Jacob, PhD . . . Women and Infants Hospital. . . . . . .G6 Cannizzaro, Linda, PhD . Montefiore Medical Center . . . . . . .E3 Cannon, Cheryl . . . . . Capital District Sickle Cell Disease FoundationU6 Capano, Ronald . . . . . Cooley's Anemia International . . . . .U8 Capobianco, Marie. . . . National Mucopolysaccharidosis SocietyU25 Caragol-Rivera, Enid, MD Universidad de Puerto Rico. . . . . . D32 Carde, Lynda, RN . . . . The Brooklyn Hospital Center. . . . . C23 Cardella, Arthur V . . . National Multiple Sclerosis Society . U25 Careas, J Alilin, MD . . Winthrop University Hospital. . . . . .L3 Carey, Dennis, MD. . . . North Shore Long Island Jewish Medical CenterL2 Carfi, Laura . . . . . . Mid-Hudson Valley Down Syndrome Congress, IncU20 Carlo, Simón, MD . . . . Ponce School of Medicine. . . . . . . D30 Carlson, Ann, MS . . . . The New York Hospital-Cornell Medical CenterD17 Carter, Suzanne M, MS. . Montefiore Medical Center . . . . . . C22 Caruso, Linda, RN. . . . Myelomeningocele Parent Support Group U22 Castells, Salvador, MD . SUNY Downstate Medical Center . . . . .L2 Castro-Magana, Mariano, MD. . Winthrop University Hospital . . C61 Chaganti, Raju S, PhD. . Memorial Hospital-Sloan Kettering Cancer CenterE4, F12 Chaganti, Raju S, PhD. . New York Hospital-Cornell Medical CenterD18 Chasen, Stephen T, MD. . The New York Hospital-Cornell Medical CenterD17 Chervenak, Frank, MD . . The New York Hospital-Cornell Medical CenterD17 Chicco, Peter. . . . . . Cooley's Anemia Foundation. . . . . . .U7 Chu, Mary Lynn, MD . . . Hospital for Joint Diseases . . . . . .N2 Chung, Wendy, MD, PhD. . New York Presbyterian Hospital. . . . C43 Chutorian, Abraham, MD . New York Hospital/Cornell Medical CenterN2 Ciacci, Richard. . . . . National Marfan Foundation. . . . . . U24 Clark, Cathy . . . . . . Muscular Dystrophy Association of AmericaU21 Clarke, Lorraine . . . . New York State Department of Health . .B1 Clavell, Luis. . . . . . Virgin Island Comprehensive Care ProgramP46 Clogg, Kristin . . . . . Muscular Dystrophy Association of AmericaU21 Clow, Cheryl, RN . . . . Albany Medical Center . . . . . . . . C15 Cohen, Sandra, MS. . . . New York Downtown Hospital. . . . . . D16 Conners, Susan . . . . . Tourette Syndrome Association . . . . U32 Cook, Perry, MD. . . . . The Brooklyn Hospital Center. . . . . P18 Corhummel, Ann . . . . . Amyotrophic Lateral Sclerosis AssociationU5 Coster, Sonya H. . . . . Laurence-Moon-Bardet-Biedl Syndrome NetworkU17 Cox, Elana, MS . . . . . New York Presbyterian Hospital. . . . C43 Coyle, Thomas, MD. . . . SUNY Upstate Medical University . . . .K1 Crimarco, Virginia M, RN Children's PKU Network. . . . . . . . .U7 Crohn, George, Jr. . . . National Foundation for Jewish Genetic DiseasesU23 Crosley, Carl J, MD. . . SUNY Upstate Medical University . . . .N1 Cross, Phil. . . . . . . New York State Department of Health . .T1 Cummins, Gary. . . . . . National Kidney Foundaton . . . . . . U24 Curry, Debra . . . . . . Turner's Syndrome Society . . . . . . U33 Cutting, Gary R, MD. . . Johns Hopkins Hospital. . . . . . . . F16 Dabney, Mary Kay, MS, CGC . . Beth Israel Medical Center . . . .H9 Dabney, Mary Kay, MS, CGC . . St. Luke's-Roosevelt Hospital CenterH12 Daley, Katherine, MS . . Beth Israel Medical Center. . . . . . C29 Darby, Christine . . . . Spina Bifida Association. . . . . . . U30 da Silva, Myrta, MSW . . Sickle Cell Disease Parent's Support GroupU29 Dasgupta, Indira, MD . . Our Lady of Mercy Medical Center. . . P16 Dave-Sharma, Swati, MD . Lincoln Medical & Mental Health CenterC19 David, Karen L, MD . . . Long Island College Hospital. . . . . D11 David, Karen L, MD . . . Metropolitan Hospital Center. . . . . C33 David, Raphael, MD . . . New York University Medical Center. . .L2 Davidoff-Feldman, Barbara, MS, CGC Nassau County Medical CenterC57 Davis, James, MD . . . . SUNY at Stony Brook . . . . . . . . . .N3 Davis, Jessica G, MD . . The New York Hospital-Cornell Medical CenterD17 Davis, Susan, RN . . . . Winthrop University Hospital. . . . . P45 DeCelie-Germana, Joan K, MD . North Shore Long Island Jewish Medical CenterI2 Delfiner, Joel S, MD . . Nassau County Medical Center. . . . . .N3 DeLuca, Jane, RN, MSN, PNP. . University of Rochester School of MedicineC7 DeMeo, Frank . . . . . . March of Dimes Birth Defects FoundationU20 Demsky, Marcy, MS. . . . SUNY at Stony Brook . . . . . . . . . C59 Denchy, Ruth Ann, MS . . New York Presbyterian Hospital. . . . C43 Desnick, Robert J, PhD, MD. . Mount Sinai Medical CenterC35, C36, E4, F12, G4, J2 DeVincentis, Ellen W, MS, RD. Children's Hospital of Buffalo . .C4 DeVivo, Darryl, MD . . . Columbia-Presbyterian Medical Center. .N2 DeVizo, Andrea, MS . . . University of Rochester School of MedicineC8 DeWald, Gordon, PhD. . . Mayo Collaborative Services, Inc. . . .E8 Dexter, Scott, MD. . . . Albany Medical Center . . . . . . . . C15 Diaz, George, MD . . . . Mount Sinai Medical Center. . . . . . C35 Diaz-Barrios, Vivien, MS, CGC Nassau County Medical Center . . C57 DiCioccio, Richard A, PhD . . Roswell Park Cancer Institute. . .H3 DiFilippo, Terri . . . . Cooley's Anemia Foundation. . . . . . .U8 Di Mango, Emily, MD. . . Columbia-Presbyterian Medical Center. .I2 DiMartino-Nardi, Joan, MD . . Montefiore Medical Center. . . . .L1 DiMichele, Donna, MD . . New York Presbyterian Hospital. . . . .K2 Djurdjinovic, Luba, MS . Binghamton Genetic Counseling Program C13 Dobkin, Sharon . . . . . Immune Deficiency Foundation. . . . . U15 Dobkin, Sharon . . . . . Myoclonus Families United . . . . . . U22 Dockter, Edith . . . . . Institute for Basic Research. . . . . .T3 Donhowe, John, MD. . . . Bellevue Maternity Hospital . . . . . .G3 Dosik, Harvey, MD. . . . New York Methodist Hospital . . . C27, E3 Dozor, Allen, MD . . . . Westchester County Medical Center . . .I2 Dringer, David . . . . . Charcot-Marie-Tooth Association . . . .U7 Druschel, Charlotte, PhD New York State Department of Health . .T1 Dubansky, A Stephen, MD. SUNY Upstate Medical University . . . .P6 Ducey, James, MD . . . . Staten Island University Hospital . . D22 Duffy, Kathy, RN . . . . White Plains Hospital . . . . . . . . .H7 Dugan, General Mike. . . National Multiple Sclerosis Society . U25 Dugger, Theresa, MS. . . Harlem Hospital Center . . . . . . . C31 Dugger, Theresa, MS. . . St. Mary's Hospital for Children. . . D24 Dundee, Parvati. . . . . Muscular Dystrophy Association of AmericaU21 Dunn, Harry, MD. . . . . Albany Medical Center . . . . . . .J1, P7 Dunn, Teresa, MD . . . . Mount Sinai Medical Center. . . . . . C36 Duraseau, Herold, MD . . Good Samaritan Hospital . . . . . . . P38 Durcan, Judy, MS . . . . Genzyme Genetics. . . . . . . . . . . .D4 Eckroth, David . . . . . American Parkinson Disease Association.U4 Edelstone, Daniel, MD. . Albany Medical Center . . . . . . . . C15 Edge, Stephen. . . . . . Roswell Park Cancer Institute .H2, T1, T3 Ekstein, Joseph, Rabbi . Dor Yeshorim. . . . . . . . . . . . . .D8 Ellis, Nathan A, PhD . . Memorial Hospital-Sloan Kettering Cancer CenterF12 Ely, Bob . . . . . . . . SOFT. . . . . . . . . . . . . . . . . U31 Ely, Linda . . . . . . . SOFT. . . . . . . . . . . . . . . . . U31 Emmerick, Susanne Bross. National Incontentia Pigmenti FoundationU23 Eng, Christine M, MD . . Mount Sinai Medical Center. . . . . . C35 England, Thomas, PhD . . Specialty Laboratories, Inc . . . . . .G6 Erbe, Richard W, MD. . . Children's Hospital of BuffaloC3, E2, F11, M1, R1 Erickson, Marilyn, MS. . The Brooklyn Hospital Center. . . . . C23 Erlenmeyer-Kimling, L, PhD. . New York State Psychiatric InstituteD20 Evitar, Lydia, MD. . . . North Shore Long Island Jewish Medical CenterN3 Fahn, Stanley, MD. . . . The Movement Disorder Society . . . . U21 Fahn, Stanley, MD. . . . Neurological Institute. . . . . . . . .T2 Fallet, Shari, DO. . . . Children's Hospital of New Jersey at NewarkS1 Farrell, Carolyn D, MS, CNP . Roswell Park Cancer Institute. . .H2 Fay, Karen, MS . . . . . SUNY Upstate Medical University . . . C11 Finch, Magda, RN . . . . Virgin Island Comprehensive Care ProgramP46 Finn-Powers, Judy, MS. . Montefiore Medical Center . . . . . . C22 Fischetti, Michael . . . Guardians of Hydrocephalus Research FoundationU14 Flamm, Michael, MD . . . Columbia-Presbyterian Medical Center. P26 Flores, Idhaliz, PhD . . Ponce School of Medicine. . . . . . . D30 Flynn, Kay . . . . . . . Charcot-Marie-Tooth Association . . . .U6 Fong, Chin-To, MD. . . . University of Rochester School of MedicineC7 Forbes, Howard, MSW. . . Harlem Hospital Center. . . . . . . . C31 Forbes, Howard, MSW. . . Sickle Cell Family Group. . . . . . . U30 Fort, Pavel, MD. . . . . North Shore University Hospital . . . .L3 Forte, Frank J, MD . . . Staten Island University Hospital . . P33 Fournier, Jo Anne. . . . Cystic Fibrosis Foundation. . . . . . U10 Fox, Joyce E, MD . . . . North Shore Long Island Jewish Medical CenterC51 Frank, Graeme, MD. . . . North Shore Long Island Jewish Medical CenterL2 Franklin, Bonita, MD . . New York University Medical Center. . .L2 Fresina, Denise. . . . . Cystic Fibrosis Foundation. . . . . . U10 Frey, Michael, PhD . . . Pediatric Specialty Lab . . . . . . . F11 Friedman, Kenneth, MD. . The Blood Center of Southeastern Wisconsin, IncF15 Friedrich, Alexa . . . . Huntington's Disease Society of AmericaU15 Fuchs, Andrea, MS. . . . Beth Israel Medical Center. . . . . . C29 Fuhrman, Elaine, MS. . . St. Luke's-Roosevelt Hospital Center. C45 Furman, Yael, MS . . . . Genzyme Genetics. . . . . . . . . . . .D4 Gagliano, Joseph, Jr . . National Marfan Foundation . . . . . U25 Galvin-Parton, Patricia A, MD SUNY at Stony Brook. . . . . C59, M2 Gangell, Sandra. . . . . Teratogen Information Service . . . . .Q2 Gardner, Kara, MS. . . . Lincoln Medical & Mental Health CenterC19 Gelb, Bruce, MD. . . . . Mount Sinai Medical Center. . . . . . C35 Generski, Karen. . . . . Crohn's and Colitis Foundation of AmericaU9 Gerardi, Geri. . . . . . Long Island Fragile X Alliance. . . . U18 Gerardi, Joe . . . . . . Long Island Fragile X Alliance. . . . U18 German, James L, III, MD The New York Hospital-Cornell Center. D18 German, James L, III, MD Weill Medical Medical College of Cornell UniversityT1 Gerschowitz, Jennifer, MS . . Beth Israel Medical Center . . . C29 Gersen, Steven, PhD. . . Dianon Systems, Inc . . . . . . . .E6, G5 Gertner, Mel, MD . . . . City Hospital at Elmhurst . . . . . . C49 Giampietro, Philip, PhD, MD . Lincoln Medical & Mental Health CenterC19 Giampietro, Philip, PhD, MD . The New York Hospital-Cornell Medical CenterD17 Giannone, Jean . . . . . Project Hope. . . . . . . . . . . . . U29 Giardina, Patricia JV, MD . . The New York Presbyterian HospitalP29 Gilbert, Fred, MD. . . . The Brooklyn Hospital Center. . . . . C23 Gilbert, Fred, MD. . . . The New York Hospital-Cornell Medical CenterD17, F13 Gilbert, Fred, MD. . . . Strang Cancer Prevention Center . . . H13 Giusti, Robert, MD . . . Long Island College Hospital. . . . . .I2 Glaser, Randy Yudenfriend . . ML4 Foundation . . . . . . . . . U20 Glogowski, Emily, MS . . Memorial Hospital-Sloan Kettering Cancer CenterH10 Godwin, Ira D, MD. . . . American Medical Laboratories . . . . .G5 Goldstein, Gwen, MS. . . SUNY at Stony Brook . . . . . . . . . C59 Goldstein, Heidi, MD . . New York University Medical Center. . .N3 González-Pijem, Lillian, MD . Universidad de Puerto Rico . . . D32 Gordon, Mary . . . . . . Cystic Fibrosis Foundation. . . . . . U10 Gorvoy, Jack, MD . . . . North Shore Long Island Jewish Medical CenterI2 Goyer, Michelle R, MS. . Albany Medical Center . . . . . . . . C15 Grace, Marie, PhD. . . . Mount Sinai Medical Center. . . . . . C36 Grant, Alfred D, MD. . . Hospital for Joint Diseases . . . . . .N2 Gray, Christina, RN. . . Albany Medical Center . . . . . . . . .P7 Graziano, Joan, MD . . . Saint Vincent Catholic Medical Centers of New YorkP32 Greendale, Karen, MA . . New York State Department of Health . .B2 Grieg, Fanella, MD . . . Mount Sinai Medical Center. . . . . . .L2 Griffin, Constance A, MD Johns Hopkins Hospital. . . . . . . . F16 Grinberg, Mikhail, MD. . Maimonides Medical Center . . . . . . .J1 Gross, Susan J, MD . . . Montefiore Medical Center . . . . . . C21 Grossi, Mauro, MD. . . . Children's Hospital of Buffalo. . . . .P2 Grossman, Craig. . . . . Crohn's and Colitis Foundation of AmericaU9 Grover, Ranjeet, MD. . . St. Luke's-Roosevelt Hospital Center. P31 Grupper, David . . . . . Tourette Syndrome Association, Inc. . U32 Guarini, Ludovico, MD. . Maimonides Medical Center . . . . . . P21 Guthrie, Donna . . . . . Huntington's Disease Local Contacts . U14 Gutman, Alyson, MD . . . Lincoln Medical & Mental Health CenterC19 Gura, Kathy. . . . . . . CHERUB. . . . . . . . . . . . . . . . .U6 Guzman, Edwin, MS. . . . New York Presbyterian Hospital. . . . C43 Hairston, Johnita. . . . Muscular Dystrophy Association of AmericaU21 Hajjar, Katherine A, MD. New York Presbyterian Hospital. . . . P29 Hall, Jim. . . . . . . . American Parkinson Disease Association.U5 Hall, Nancy. . . . . . . American Parkinson Disease Association.U5 Hamilton, Diane. . . . . Tourette Syndrome Association . . . . U32 Hampshire, Brian . . . . PATCH . . . . . . . . . . . . . . . . U28 Hantman, Ellen, MS . . . Blythedale Children's Hospital. . . . .D3 Hantman, Ellen, MS . . . Montefiore Medical Center . . . . . . C22 Harkang-Friedman, Jill, PhD . New York State Psychiatric InstituteD20 Harrington, Thom . . . . Hemophilia Association of New York. . U14 Harris, Juliette, MS, PhD . . The Neurological Institute . . . D13 Harris, Katharine B, MBA New York State Department of HealthB1, R2 Harrison, Betty A, MS. . Albany Medical Center . . . . . . . . .E2 Hart, David, MD. . . . . New York University Medical Center. . P30 Hayward, Pamela. . . . . SCOSH . . . . . . . . . . . . . . . . U30 Healy, Nanette P . . . . New York State Department of HealthB1, E1, T1 Heffner, Reid R, Jr, MD. Erie County Medical Center. . . . . . .P3 Hegarty, Elizabeth, MS . Winthrop University Hospital. . . . . C61 Hernandez, Sandra, CSW . St. Luke's-Roosevelt Hospital Center. C45 Herring, Kathy . . . . . March of Dimes Birth Defects FoundationU19 Higgins, Alice . . . . . Little People of America. . . . . . . U18 Higgs, Linda, MS . . . . Regional Medical Genetics Center. . . C17 Hirano, Michio, MD . . . Columbia-Presbyterian Medical Center. .N2 Hirschhorn, Kurt, MD . . Mount Sinai Medical Center. . . . . . C35 Hirschhorn, Rochelle, MD New York University Medical Center. . C40 Hoo, Joe J, MD . . . . . Binghamton Genetic Counseling Program C14 Hoo, Joe J, MD . . . . . SUNY Upstate Medical University . C11, H5 Hoover, Jacqueline, MS . Regional Medical Genetics Center. . . C17 Hsu, Lillian YF, MD. . . New York University Medical Center. . C39 Hull Barbara, MS . . . . Nassau County Medical Center. . . . . C57 Hull, Judith, MS . . . . Memorial Hospital-Sloan Kettering Cancer CenterH10 Hultin, Mae B, MD. . . . SUNY at Stony Brook . . . . . . . . . .K3 Hunter-Grant, Cheryl, MSW . . Children's Defense Fund. . . . . .R1 Hurlett, Ann, MD . . . . Mount Sinai Medical Center. . . . . . P28 Hussain, Shafkat, MD . . Coney Island Hospital . . . . . . . . P19 Hutcheon, Gordon, MD . . Saint Vincent Catholic Medical Centers of New YorkC47 Hyman, David B, MD . . . The Genetics Center . . . . . . . . . D26 Hymes, Kenneth, MD . . . New York University Medical Center. . P30 Iannuzzi, Debra, MD. . . SUNY Upstate Medical University . . . .I1 Ince, Helene, MS . . . . Interfaith Medical Center . . . . . . .D9 Jacobson, Herbert, PhD . Albany Medical Center . . . . . . . . .G3 Jacques, Monica. . . . . National Marfan Foundation. . . . . . U24 Janes, Sally R, MSW. . . Children's Hospital of Buffalo. . . . .C3 Jansen, Valerie, MS. . . New York University Medical Center. . C39 Jayabose, S, MD. . . . . New York Medical College. . . . . . . P10 Jenkins, Edmund C, PhD . Brookdale Hospital Medical Center .D7, E3 Jenkins, Edmund C, PhD . IBR Specialty Clinical LaboratoriesE5, F14 Jenkins, Edmund C, PhD . Institute for Basic Research. . . . . C55 Johnson, Altheada. . . . VHL Family Alliance . . . . . . . . . U33 Jouayed, Nelly, MD . . . Harlem Hospital Center. . . . . . . . C31 Jouayed, Nelly, MD . . . St. Mary's Hospital for Children. . . D24 Jubelt, Burk, MD . . . . SUNY Upstate Medical University . . . .N1 Kaffe, Sara, MD. . . . . City Hospital at Elmhurst . . . . . . C49 Kaffe, Sara, MD. . . . . Queens Hospital Center. . . . . . . . C53 Kamen, Heather, MS . . . The New York Hospital-Cornell Medical CenterD17 Kandel, Jo . . . . . . . SOFT. . . . . . . . . . . . . . . . . U31 Kandel, Mark . . . . . . SOFT. . . . . . . . . . . . . . . . . U31 Kandel, Shira. . . . . . Juvenile Diabetes Foundation. . . . . U16 Kaplan, Barry H, MD. . . Booth Memorial Medical Center . . . . P34 Kaplan, Karen L, MD. . . City Hospital at Elmhurst . . . . . . P35 Kaplan, Lawrence, PhD. . Bellevue Hospital . . . . . . . . . . .G4 Kardon, Nataline, MD . . Mount Sinai Medical Center. . . .C35, C36 Karpatkin, Margaret, MD. New York University Medical Center. . .K2 Kash, Kathryn, PhD . . . Strang Cancer Prevention Center . . . H13 Kaslovsky, Robert A, MD. Albany Medical Center . . . . . . . . .I1 Kattan, Meyer, MD. . . . Mount Sinai Medical Center. . . . . . .I2 Kaufmann, Charles, MD. . New York State Psychiatric Institute. D20 Kaufman, Jennifer, MS. . New York Presbyterian Hospital. . . . C43 Kegerize, Joan, MS . . . Genzyme Genetics. . . . . . . . . . . .D4 Keirzy, Carol M. . . . . National Multiple Sclerosis Society . U26 Kelly, Dan . . . . . . . Cystic Fibrosis Foundation. . . . . . U10 Kelly, JoAnn, PhD. . . . Quest Diagnostics Clinical Labs . .E8, G6 Kemel, Yelena, MS. . . . North Shore University Hospital .D27, H16 Kennedy, Gloria, MD. . . SUNY Upstate Medical University . . . .K1 Kenney, Patricia M . . . March of Dimes Birth Defects FoundationU19 Kerman, Shelly, MD . . . American Medical Laboratories, Inc. . .E6 Khakoo, Yusuf F, MD. . . Harlem Hospital Center. . . . . . . . P27 Kharbutli, Yara, MS. . . Mount Sinai Medical Center. . . . . . C36 Kieras, Fred, PhD. . . . Institute for Basic Research. . . . . C55 Killos, Lillian, PhD . . Genetics & IVF Institute. . . . . . . .E7 King, Mary-Claire, PhD . University of Washington. . . . . . . F18 Kirshner, Tina . . . . . Cornelia de Lange Syndrome. . . . . . .U8 Klee, George, MD, PhD. . Mayo Medical Laboratories . . . . . . .G5 Knors, Viola, RN, CNS. . St. Luke's-Roosevelt Hospital Center. P31 Knowles, Daniel M, MD. . The New York Hospital-Cornell Medical CenterD18 Knowles, James A, MD, PhD . . New York State Psychiatric InstituteD20 Kochen, Joseph A, MD . . North Shore University Hospital . K3, P40 Koduru, Prasad, PhD. . . North Shore University Hospital . . . .E5 Koduru, Prasad, PhD. . . Winthrop University Hospital. . . . . .E6 Kohn, Brenda, MD . . . . New York University Medical Center. . .L2 Kolodny, Edwin H, MD . . New York University Medical CenterC39, F13 Kornreich, Ruth, PhD . . Mount Sinai Medical Center. . . . . . C36 Kosar, Annette . . . . . March of Dimes Birth Defects FoundationU20 Kosuri, Sujatha, MD. . . Nassau County Medical Center. . . . . P39 Kouides, Peter, MD . . . Mary M Gooley Hemocenter, Inc . . . . .K1 Koval, Carrie, MS. . . . City Hospital at Elmhurst . . . . . . C49 Koval, Carrie, MS. . . . New York Presbyterian Hospital. . . . C43 Kraybill, William, MS. . Roswell Park Cancer Institute . . . . .T4 Krieger, Gary. . . . . . Polycystic Kidney Research Foundation U28 Krikker, Margaret, MD. . Hemochromatosis Research Foundation . U14 Krishna, Maryala, PhD. . Interscience Diagnostic Labs, Inc.. . .E3 Kristaponis, Barbara . . Acoustic Neuroma Association. . . . . .U1 Krogh, Jacquelyn, MS . . Institute for Basic Research. . . . . C55 Kronn, David F, MD . . . Regional Medical Genetics Center. . . C17 Kronn, David F, MD . . . Westchester County Medical Center . . .M2 Kula, Roger W, MD. . . . Long Island College Hospital. . . . . .N2 Kupchik, Gabriel S, MD . Brookdale Hospital Medical Center . . .D7 Kupchik, Gabriel S, MD . Maimonides Medical Center . . . . . . C25 Kurlan, Roger, MD. . . . University of Rochester School of MedicineT4 Kurnitz, Julie . . . . . National Marfan Foundation . . . . . U24 Kusmierz, Donna. . . . . Crohn's and Colitis Foundation of AmericaU9 Kusmierz, Mike . . . . . Crohn's and Colitis Foundation of AmericaU9 LaBella, Sandra. . . . . University of Rochester School of MedicineC8 LaBier, Linda B, RN. . . Albany Medical Center . . . . . . . . .J1 Lai-Goldman, Myla P, MD. Laboratory Corporation of America HoldingsF17, G5 Lamarche, Patricia, RN, PNP . Children's Hospital at Strong. . .P5 Lamb, Allen, PhD . . . . Genzyme Genetics. . . . . . . . . E7, F16 Lander, Louise E . . . . Genetic Alliance. . . . . . . . . . . U13 Lanman, Joseph, PhD. . . SUNY at Stony Brook . . . . . . . . . .E5 Lanks, Karl W, MD, PhD . Staten Island University Hospital . . D22 Larousse, Susan, MS. . . The New York Hospital-Cornell Medical CenterD17 Laurino, Tony. . . . . . Cooley's Anemia Foundation. . . . . . .U8 Lava, Neil S, MD . . . . Albany Medical Center . . . . . . . . .N2 Lebo, Roger V, PhD . . . Boston University Medical School. E6, F15 Lee, Audrey. . . . . . . Acoustic Neuroma Association. . . . . .U1 Lee, Jo Ellen, PhD . . . Quest Diagnostics, Inc. . . . . . . . .G6 Lee, Stanley, MD . . . . Brookdale Hospital Medical Center . . P17 Lefkowitz, Schmuel, Rabbi . . Dor Yeshorim . . . . . . . . . . .D8 Lehman, Leorosa, MD. . . Erie County Medical Center. . . . . . .P3 Leichman, Lawrence, MD . Roswell Park Cancer Institute . . . . .H3 Lemay, Lydia . . . . . . Mid-Hudson Valley Down Syndrome Congress, IncU20 Leone, Susan . . . . . . Cornelia de Lange Syndrome. . . . . . .U8 Lerner, Norma, MD. . . . Children's Hospital at Strong . . . . .P5 Lerner, Robert, MD . . . New York Medical College. . . . . . . P10 Levering, Carolyn. . . . National Marfan Foundation. . . . . . U24 Levi-Pearl, Sue. . . . . Tourette Syndrome Association . . . . U31 Levine, Malcolm E, MD. . The Jamaica Hospital Medical Center . P36 Levy, Denise, MS . . . . The New York Hospital-Cornell Medical CenterD17 Levy, Paul A, MD . . . . Montefiore Medical Center . . . . . . C21 Li, Philip K, PhD. . . . Children's Hospital of Buffalo. . .C3, G3 Lieber, Ernest, MD . . . Interfaith Medical Center . . . . . . .D9 Lieber, Ernest, MD . . . New York Methodist Hospital . . . C27, E3 Liebers, Bonnie, MS, CGC Bellevue Woman's Health Care Plus . . .H6 Lin, Jen H, MD . . . . . Nassau County Medical Center. . . . . F14 Lipton, Jeffrey M, MD, PhD. . Mount Sinai Medical Center .C38, P34 Lizzi, Frank A, MD . . . St. Peter's Hospital. . . . . . . . . .P9 Loader, Starlene . . . . University of Rochester School of MedicineC8, H4 Lobel, Stephen, PhD. . . Quest Diagnostics, Inc. . . . . . . . .G5 Lock, Thomas, MD . . . . Children's Hospital of Buffalo. . . . .C3 Locurto, Joan. . . . . . Cooley's Anemia Foundation. . . . . . .U7 Lo Guidice, Rita . . . . Dystonia Medical Research Foundation. U11 Look, David. . . . . . . Parkinson's Support Group of Upstate New YorkU28 Lopez, Gwen, MS. . . . . Binghamton Genetic Counseling Program C13 Loree, Thom, MD. . . . . Roswell Park Cancer Institute . . . . .H3 Lovelace, Robert, MD . . Helen Hayes Hospital. . . . . . . . . .N2 Lubin, Matthew B, MD . . New York Hospital-Cornell Medical CenterD15 Lundberg, Jill, MS . . . North Shore University Hospital . . . D27 Lynch, Lauren, MD. . . . . . . . . . . . . . . . . . . . . . . D29 Lynch, Susan . . . . . . Fragile X Resource Center for Upstate New YorkU13 MacGillivray, Margaret, MD. . Children's Hospital of Buffalo . .L1 MacLaughlin, William, MD United Health Services-Wilson Memorial HospitalK1 Macri, James N, PhD. . . NTD Laboratories, Inc . . . . . . . . .G4 Madnick, Myra. . . . . . National Down Syndrome Society. . . . U23 Maestri, Mary Jo, MS . . SUNY Upstate Medical University . . . C11 Maestrone, Sophia. . . . American Parkinson Disease Association.U4 Mahar, Caren J . . . . . Xeroderma Pigmentosum Society . . . . U33 Maier, Robin . . . . . . Anencephaly Support Network . . . . . .U5 Majsak, Ann. . . . . . . Parent Assistance Committee on Down SyndromeU27 Malaspina, Dolores, MD . New York State Psychiatric Institute. D20 Mamelony, Alfred, MD . . American Parkinson Disease Association.U4 Mancino, John. . . . . . Cooley's Anemia Foundation. . . . . . .U8 Manley, Marion . . . . . American Parkinson Disease Association.U4 Manrique, Raul, MD . . . City Hospital at Elmhurst . . . . . . .K2 Manwanim, Deepa, MD. . . Mount Sinai Medical Center. . . . . . P28 Marinello, Michelle J, PhD. . Genetic Diagnostic Laboratories. .E2 Marion, Robert W, MD . . Blythedale Children's Hospital. . . . .D3 Marion, Robert W, MD . . Montefiore Medical Center . . . . . . C21 Marotta, Al. . . . . . . Mid-Hudson Valley Down Syndrome Congress, IncU20 Martignetti, John, MD, PhD. . Mount Sinai Medical Center . . . C35 Masiello, Meredith, MS . North Shore Long Island Jewish Medical CenterC51 Matthew, Mavis, MD, MPH. Virgin Island Comprehensive Care ProgramP46 Mays, Jonathan, MD . . . Staten Island University Hospital . . D22 McCombs, Jerome I, PhD . Esoterix Oncology . . . . . . . . . . .E7 McDermet, Melanie, MS. . Genzyme Genetics. . . . . . . . . . . .D4 McGheachey-Price, Carolyn, RN The Brooklyn Hospital Center . . P18 McGlynn, Julie, MS . . . Mount Sinai Medical Center. . . . C36, S2 McGovern, Margaret M, PhD, MD Mount Sinai Medical Center .C35, C38 McGuire, Tanya, MS . . . SUNY Upstate Medical University . . . C11 McKenna, Carrie, MS. . . North Shore University Hospital . . . D27 McLaughlin, Julie, MS. . North Shore University Hospital . . . D27 McMahan, Colin, MD . . . Children's Hospital of Buffalo. . . . .I1 McWilliams, Scott, MD. . St. Charles Hospital and Rehabilitation CenterN3 Mehta, Lakshmi, MD . . . North Shore University Hospital .D27, H16 Menzel, Meg, MS. . . . . Metropolitan Hospital Center. . . . . C33 Michelman, Stan. . . . . National Tay-Sachs and Allied Diseases AssociationU27 Miller, Barbara, MS, CGC Nassau County Medical Center. . . . . C57 Miller, Frederick, MD. . SUNY at Stony Brook . . . . . . . . . F14 Miller, Mary, MS . . . . Saint Vincent Catholic Medical Centers of New YorkC47 Miller, Richard K, PhD . Perinatal Environmental Consultation ServiceQ4 Miller, Robert C, PhD. . Genzyme Genetics - Tampa. . . . . . . .E8 Miller, Scott T, MD. . . SUNY Downstate Medical Center . . O1, P23 Miller, Theresa. . . . . Muscular Dystrophy Association of AmericaU21 Mistry, Pramod, MD, PhD. Mount Sinai Medical Center. . . . . . C36 Mitsumoto, Hiroshi, MD . Columbia-Presbyterian Medical Center. .N2 Mixon, James, MD . . . . Esoterix Oncology . . . . . . . . . . .E6 Mizejewski, Gerald J, PhD . . New York State Department of HealthB1, G1, G3 Molette, William . . . . North Shore Long Island Jewish Medical CenterC51, P43 Mongold, Ken . . . . . . National Multiple Sclerosis Society . U26 Montalvo, Mary Lee . . . American Parkinson Disease Association.U4 Montgomery, Mia. . . . . Heart Share . . . . . . . . . . . . . U14 Moohr, John W, MD. . . . Woodhull Medical Center . . . . . . . P24 Mooney, Robert A, PhD. . University of Rochester School of MedicineC8 Moore, Christine R, MS . Albany Medical Center . . . . . . . . C15 Moore, Francis X, MD . . North Shore University Hospital at Glen CoveP41 Moran, Ellen, MS . . . . Hospital for Joint Diseases . . . D13, N2 Moran, Ellen, MS . . . . New York University Medical Center. . C40 Morgenstern, Randy . . . Association for Glycogen Storage DiseaseU6 Morris, Sue. . . . . . . Huntington's Disease Society of AmericaU15 Moss, Arthur J, MD . . . University of Rochester School of MedicineT3 Moulton, Thomas, MD. . . Lincoln Medical & Mental Health CenterC19, O1, P14 Muhlfelder, Thomas, MD . Bronx Veteran Affairs Medical Center. P13 Mullen, Joyce. . . . . . National Adrenal Diseases Foundation. U22 Murray, Beryl, MS. . . . Sickle Cell Anemia Foundation of Greater New YorkU29 Murphy, Patricia . . . . New York Medical College. . . . . .T1, T4 Murphy, Patricia D, PhD. Bellevue Woman's Health Care Plus . . .H6 Murphy, Patricia D, PhD. Gene Logic, Inc . . . . . . . . . . . F16 Murty, Vundavalli VVS, PhD. . Columbia University. . . . . . . F12 Nagel, Ronald L, MD. . . Albert Einstein College of Medicine . P11 Naini, Ali, PhD. . . . . Columbia University . . . . . . . . . F12 Najfeld, Vesna, PhD. . . Mount Sinai Medical Center. . . . . . .E4 Nakamura, Robert M, MD . Prometheus Laboratories, Inc. . . . . F17 Natowicz, Marvin, MD . . Eunice Kennedy Shriver Center . . . . F16 Naylor, Edwin, PhD . . . Neo Gen Screening LP. . . . . . . . . F17 Neil, Jennifer, MS . . . SUNY at Stony Brook . . . . . . . . . C59 Nelson, Jerald C, MD . . Quest Diagnostics, Inc. . . . . . . . F17 New, Maria I, MD . . . . The New York Presbyterian Hospital. . F13 Newson, Erica A. . . . . Developmental Disabilities Prevention ProgramU11 Ng, Janice, MS . . . . . New York University Medical Center. . C39 Nichols, Josephine . . . Malignant Hyperthermia Association of the USU18 Nigrin, Gabriel, MD. . . Saint Vincent Catholic Medical Centers of New YorkL2 Nitowsky, Harold, MD . . Dor Yeshorim. . . . . . . . . . . . . .D8 Nitowsky, Harold M, MD . Montefiore Medical CenterC21, E3, F11, G4 Nolia, Sarah L, PhD. . . Institute for Basic Research. . . . . C56 Noto, Richard, MD. . . . Saint Vincent Catholic Medical Centers of New YorkL2 Noto, Richard, MD. . . . Westchester County Medical Center . . .L1 Nussbaum, Murray L, MD . Binghamton Genetic Counseling Program C13 O'Brien, Joseph E, MD. . Quest Diagnostics, Inc. . . . . . . . .G6 O'Brien, Kathleen, MS. . Winthrop University Hospital. . . . . C61 O'Donnell, Thomas B. . . Parkinson's Wellness Group. . . . . . U28 O'Malley, Linda, RN. . . Roswell Park Cancer Institute .T1, T2, T3 Odaimi, Marcel, MD . . . Staten Island University Hospital . . P33 Oddoux, Carole, PhD. . . New York University Medical Center. . C40 Offit, Kenneth, MD, MPH. Memorial Hospital-Sloan Kettering Cancer CenterH10, T2 Olesik, Joseph . . . . . Little People of America. . . . . . . U17 Orlowski, Craig, MD. . . Strong Memorial Hospital. . . . . . . .L1 Ostrer, Harry, MD. . . . Hospital for Joint Diseases . . . . . D13 Ostrer, Harry, MD. . . . New York University Medical CenterC39, F13 Packer, Leslie, PhD. . . Tourette Syndrome Association, Inc. . U32 Pahuja, Gargi. . . . . . Thalassemia Action Group. . . . . . . U31 Papenhausen, Peter, PhD. Laboratory Corporation of America . . .E7 Paradiso, Connie . . . . Cooley's Anemia Foundation. . . . . . .U8 Paradiso, Peter, PhD . . Cooley's Anemia Foundation. . . . . . .U7 Parker, Robert, MD . . . SUNY at Stony Brook . . . . . . . .J2, K3 Pass, Kenneth A, PhD . . New York State Department of HealthB2, R1 Pastores, Gregory, MD. . Mount Sinai Medical Center. . . . C35, J2 Pastores, Gregory, MD. . New York University Medical Center. . C39 Pearce, Jennifer M, MD . Albany Medical Center . . . . . . . . .P7 Penchaszadeh, Graciela, MS. . New York State Psychiatric InstituteD20 Penchaszadeh, Victor, MD Beth Israel Medical Center. . . . C29, S1 Perciaccante, Ronald, MD House of Good Samaritan Medical Center.I1 Pergolizzi, Robert, PhD. North Shore University Hospital . . . D27 Perkins, Patricia. . . . Sickle Cell Disease Parent Association, IncU29 Perle, Mary Ann, PhD . . New York University Medical Center. . .E4 Pesce, Michael, PhD. . . New York Presbyterian Hospital. . . . .G4 Petersen, Bert M, Jr . . Beth Israel Medical Center. . . . . . .H9 Petersen, Bert M, Jr . . St. Luke's-Roosevelt Hospital Center. H12 Peterson, Jeanne, MS . . University of Rochester School of MedicineC8 Peterson, Eleanor W, RN, MA . Harlem Hospital Center . . . . . C31 Petrelli, Nicholas J, MD Roswell Park Memorial Institute . . . .T2 Pflug, Judy. . . . . . . Crohn's and Colitis Foundation of AmericaU9 Phatak, Pradyumna D, MD. Rochester General Hospital. . . . . . .P4 Pham, Lang-Chau, MD. . . Specialty Laboratories, Inc . . . . . .E8 Pierce, Heather, PhD, MS Memorial Hospital-Sloan Kettering Cancer CenterH10 Piersimoni, Angela . . . Charcot-Marie-Tooth Association . . . .U6 Phillips, Vicki. . . . . Fanconi's Anemia Research Fund Support GroupU12 Pilgrim, Tina, RN, MA, CSW. . Binghamton Genetic Counseling ProgramC13 Piomelli, Sergio, MD . . Columbia-Presbyterian Medical Center K2, P26 Piomelli, Sergio, MD . . New York Presbyterian Hospital. . . . F13 Piver, M Steven, MD. . . Roswell Park Cancer Institute . . . . .H3 Pleskova, Irina, MD. . . Staten Island University Hospital . . P33 Plumeau, Pamela, RN, PNP University of Rochester School of MedicineC8 Porter, Ian H, MD. . . . Albany Medical Center . . . . . . C15, R1 Postulka, John . . . . . New York State Department of Health . .B2 Potaznik, Daniel, MD . . Staten Island University Hospital . . P33 Power, Patricia, MS. . . Queens Hospital Center. . . . . . . . C53 Prakash, Devina, MD. . . SUNY at Stony Brook . . . . . . . . . P44 Pressel, Paul I. . . . . American Parkinson Disease Association.U4 Puangco, Maria, RD . . . SUNY at Stony Brook . . . . . . . . . C59 Puck, Stirling, MD . . . Genzyme Genetics. . . . . . . . . .D4, G5 Punales-Morejon, Diana, MS. . Beth Israel Medical Center . . . C29 Quittel, Lynne, MD . . . Columbia-Presbyterian Medical Center. .I2 Rackmill, Elise, CSW . . St. Luke's-Roosevelt Hospital Center. C45 Radel, Eva, MD . . . . . Montefiore Medical Center . . . . . . P15 Rairo, Alfred D, MD. . . Montefiore Medical Center . . . . . . N1 Rainsford, Greta M, MD . . . . . . . . . . . . . . . . . . . . P43 Raisher, Eric L, MS. . . Long Island College Hospital. . . . . D11 Raju, Sundaram, MD . . . Woodhull Medical Center . . . . . . . P24 Ramirez, Gloria M, MD. . St. Luke's-Roosevelt Hospital Center. P31 Ramsdell, Edda . . . . . Crohn's and Colitis Foundation of AmericaU10 Rao, Sreedhar P, MD. . . SUNY Downstate Medical Center . . . . P23 Raskin, Sheldon. . . . . Acoustic Neuroma Association. . . . . .U2 Ray, James, PhD. . . . . Quest Diagnostics, Inc. . . . . . . . .E8 Raymond, Kimiyo, MD. . . Mount Sinai Medical Center. . . . . . C36 Reese, Mary, MD. . . . . Children's Hospital of Buffalo. . . . .C3 Reich, Elsa, MS. . . . . New York University Medical Center. . C39 Ren, Clement L, MD . . . SUNY at Stony Brook . . . . . . . . . .I2 Reynolds, Ann. . . . . . Turner's Syndrome Society . . . . . . U32 Richman, Robert, MD. . . SUNY Upstate Medical University . . . .L1 Riddick, Linda, MD . . . Albany Medical Center . . . . C15, L1, M2 Riessman, Frank. . . . . National Self-Help Clearinghouse. . . U27 Rifkind, Devorah Fong. . Little People of America. . . . . . . U18 Roa, Benjamin B, PhD . . Baylor College of Medicine. . . . . . F15 Robinowitz, Jane, MS . . Mount Sinai Medical Center. . . . . . C36 Robins, Edwin B, MD. . . St. Luke's-Roosevelt Hospital CenterO1, P31 Robinson, Collette A . . Camary Statewide Services . . . . . . .U6 Robinson, Jennifer, MS . University of Rochester School of MedicineT3 Robinson, Luther K, MD . Children's Hospital of Buffalo. . . . .C3 Robinson, Luther K, MD . Teratogen Information Service . . . . .Q2 Robson, Mark, PhD. . . . Memorial Hospital-Sloan Kettering Cancer CenterH10 Rochester, Gloria. . . . Queens Sickle Cell Advocacy Network Partners in HealthU29 Rodriguez, Deborah . . . New York State Department of Health . .B2 Rodriguez-Bigas, Miguel, MD . Roswell Park Cancer Institute. . .H2 Rodriguez Santana, José Rafael, MD Centro Cardiovascular de Puerto Rico Y del CaribeI3 Roe, Charles R, MD . . . Baylor University Medical Center. . . F15 Rogers, Brian, MD. . . . Children's Hospital of Buffalo. . . . .C3 Rogers, Nietta, RN . . . Binghamton Genetic Counseling Program C13 Roithmayr, Mark. . . . . March of Dimes Birth Defects FoundationU19 Roland, Mary Ann . . . . Roswell Park Cancer Institute . . . . .T2 Roland-Milano, Barbara . National Multiple Sclerosis Society . U26 Romano, James, PhD . . . Crohn's and Colitis Foundation of AmericaU9 Ronelli, Kristin . . . . Forward Face. . . . . . . . . . . . . U12 Rosa, Deborah, RN. . . . Maimonides Medical Center . . . . . . C25 Rosa-Ragona, Christina . Montefiore Medical Center . . . . . . N1 Roseman, Lenore F. . . . The Dysautonomia Foundation . . . . . U11 Rosen, Jonathan M, MD. . Albany Medical Center . . . . . . . . .I1 Rosen, Nancy . . . . . . Tourette Syndrome Association, Inc. . U32 Rosen, Rosalind Poss . . Canavan Foundation. . . . . . . . . . .U6 Rosenthal, Gladys, MS. . The New York Hospital-Cornell Medical CenterD17 Rosenthal, Gladys, MS. . Strang Cancer Prevention Center . . . H13 Ross, Linda, PNP . . . . Westchester County Medical Center . . .M2 Rossello, Kathleen, MS . University of Rochester School of MedicineC8 Rowe, Barbara. . . . . . PKU Association, Inc. . . . . . . . . U28 Rowley, Peter T, MD. . . Children's Hospital at Strong . . . . .P5 Rowley, Peter T, MD. . . University of Rochester School of MedicineC8, H4, O1 Russo, Donna, MS . . . . New York Presbyterian Hospital. . . . C43 Ryan, Daniel H, MD . . . University of Rochester/Strong Memorial HospitalF11 Ryan, Niss . . . . . . . Narcolepsy Network. . . . . . . . . . U22 Ryans, Patricia. . . . . New York Methodist Hospital . . . . . C27 Rysiecki, Gillian, PhD . Cellmark Diagnostics. . . . . . . . . F18 Sabatino, Dominick, MD . Nassau County Medical Center. . . K2, P39 Sadanandan, Swayam, MD . The Brooklyn Hospital Center. D9, K1, P18 Sadanandan, Swayam, MD . Interfaith Medical Center . . D9, O1, P20 Sadelain, Michel, MD, PhD . . Memorial Hospital-Sloan Kettering Cancer CenterH10 Sadler, Laurie S, MD . . Children's Hospital of Buffalo. . . . .C3 Salemi, Mozafar, MD. . . Mary Immaculate Hospital. . . . . . . P37 Saller, Devereux N, MD . University of Rochester School of MedicineC8 Samuelson, Bea . . . . . Foundation Fighting Blindness . . . . U12 Samuelson, Rene, MD. . . Albany Medical Center . . . . . . . . C15 Sansaricq, Claude, MD, PhD. . Mount Sinai Medical Center . C35, M2 Santa Maria, Joseph. . . Support Group for Monosomy 9p . . . . U31 Santa Maria, Noreen. . . Support Group for Monosomy 9p . . . . U31 Santiago-Cornier, Alberto, MD Ponce School of Medicine . . . . D30 Santiago-Borrero, Pedro J, MD Universidad de Puerto Rico . D32, K3 Sardella, Michelle, MS . SUNY at Stony Brook . . . . . . . . . C59 Sastry, Sujatha, MS. . . North Shore University Hospital . . . D27 Savage, Dolores, BSRN, MS . . St. Mary's Hospital for Children D24 Sawitsky, Arthur, MD . . North Shore Long Island Jewish Medical CenterJ2 Scala, John. . . . . . . Foundation Fighting Blindness . . . . U12 Schaff, Kathy. . . . . . National Marfan Foundation. . . . . . U24 Schedlbauer, Lewis . . . New York State Department of Health . .B2 Scheff, Ronald, MD . . . Staten Island University Hospital . . P33 Schefrin, Scott. . . . . American Parkinson Disease Association.U4 Scheinberg, I Herbert, MD . . The National Center for the Study of Wilson's DiseaseU22 Scheinberg, I Herbert, MD . . Wilson's Disease Laboratory. . . F14 Scheuer, Lauren, MS. . . Memorial Hospital-Sloan Kettering Cancer CenterH10 Schiefer, Kathie . . . . National Marfan Foundation. . . . . . U24 Schimanski, Carolyn. . . Parent to Parent of New York State. . U27 Schlegel, Peter N, MD. . Cornell Medical College . . . . . . . F12 Schmeider, Karyn, MS . . Mount Sinai Medical Center. . . . . . C36 Schneider, Donna . . . . Cystic Fibrosis Foundation. . . . . . U11 Schreiber, ZA, MD. . . . Bronx-Lebanon Hospital. . . . . . . . P12 Schulman, Joseph D, MD . Genetics & IVF Institute. . . . . . . .G5 Schutta, Edward J, MD. . Brookdale Hospital Medical Center . . .D7 Schwartz, Joel, MD . . . Coney Island Hospital . . . . . . . . P19 Schwind, Elinor Langfelder, MS . . Saint Vincent Catholic Medical Centers of New York . . . . . . . . . . C47, I2, R1, S2 Sciorra, Leonard J, PhD. University of Medicine & Dentistry of New JerseyE8 Scott, Robin, MS . . . . Regional Medical Genetics Center. . . C17 Segal, Stanton, MD . . . Children's Hospital of Philadelphia . F15 Segel, Elizabeth, MS . . Winthrop University Hospital. . . . . C61 Segel, George B, MD. . . Children's Hospital at Strong . . . . .P5 Segel, George B, MD. . . University of Rochester School of MedicineC7 Seltzer, William K, PhD. Athena Diagnostics, Inc . . . . . . . F15 Senn, Kevin, MD. . . . . Children's Hospital of Buffalo. . . . .C3 Seremetis, Stephanie, MD Mount Sinai Medical Center. . . . . . .K2 Sertz, Charleen. . . . . March of Dimes Birth Defects FoundationU19 Severance, Dale. . . . . Parkinson's Support Group of Syracuse, NYU28 Sexton, James F, MD. . . SUNY Upstate Medical University . . . .I1 Shah, Harshad, PhD . . . Nassau County Medical Center. . . . . .E5 Shah, Lila, MD . . . . . City Hospital at Elmhurst . . . . . . P35 Shaham, Meira F, PhD . . Genzyme Genetics. . . . . . . . . . . .D4 Shaham, Meira F, PhD . . The New York Hospital-Cornell Medical CenterD18 Shane, Heather, MS . . . St. Luke's-Roosevelt Hospital Center. C45 Shanske, Alan L, MD. . . Montefiore Medical Center . . . . C21, S2 Shapiro, Lawrence R, MD. Regional Medical Genetics Center. . . C17 Shapiro, Lawrence R, MD. Westchester County Medical Center . . .R1 Shapiro, Mitchell. . . . Foundation Fighting Blindness . . . . U13 Sheehy, John, MD . . . . North Shore University Hospital at Glen CoveP41 Shefner, Jeremy M, MD, PhD. . SUNY Upstate Medical University. .N1 Sherman, Jack, MD. . . . Nassau County Medical Center. . . . . C57 Shields, Barbara . . . . National Marfan Foundation. . . . . . U24 Shoemaker, James D, MD . St. Louis University. . . . . . . . . F17 Shotter, Barbara, RN . . Nassau County Medical Center. . . . . P39 Shprintzen, Robert J, PhD . . Velo-Cardio-Facial Syndrome Educational FoundationU33 Shrimpton, Antony E, PhD SUNY Upstate Medical University . . . F11 Siegel, Beth, MS . . . . Memorial Hospital-Sloan Kettering Cancer CenterH10 Sills, Irene, MD . . . . Albany Medical Center . . . . . . . . C15 Sills, Richard, MD . . . Albany Medical Center . . . . . . .O1, P7 Silverberg, Gittel, MS . North Shore University Hospital . . . D27 Silverman, Robert, MD. . SUNY Upstate Medical University . . . C11 Silverstone, Barbara . . SUNY Upstate Medical University . . . C11 Singer, Niecee, MS . . . Mount Sinai Medical Center. . . . . . C36 Singer, Niecee, MS . . . The New York Hospital-Cornell Medical CenterD17 Singer, Henry. . . . . . Prader-Willi Alliance of New York . . U29 Sitron, Nina, MS . . . . North Shore Long Island Jewish Medical CenterC51 Sivak, Mark, MD. . . . . Mount Sinai Medical Center. . . . . . .N2 Slonim, Alfred E, MD . . North Shore University Hospital . F14, M2 Small, Kara, MS. . . . . North Shore University Hospital . . . D27 Smisloff, Beth . . . . . Cornelia de Lange Syndrome. . . . . . .U8 Smith, Alison, MS. . . . Mount Sinai Medical Center. . . . . . C36 Smith, Janice L, PhD . . Laboratories for Genetic Services, Inc.E7 Smith, Jeanne A, MD. . . Harlem Hospital Center. . . . . .C31, P27 Smith, Kara, MS. . . . . The Brooklyn Hospital Center. . . . . C23 Snell, Tammy, MS . . . . Binghamton Genetic Counseling Program C13 Snyderman, Selma E, MD . Mount Sinai Medical Center. . . . C35, M2 Sodeman, Thomas M, MD. . North Shore Long Island Jewish Medical CenterF14 Solomon, William, MD . . SUNY Downstate Medical Center . . . . P23 Somma, Frank . . . . . . Cooley's Anemia Foundation. . . . . . .U7 Soza, Liz. . . . . . . . March of Dimes Birth Defects FoundationU20 Speiser, Phyllis, MD . . North Shore University Hospital . . . .L3 Spiro, Alfred D, MD. . . Montefiore Medical Center . . . . . . N1 Spitzer, Sylvia, PhD . . SUNY at Stony Brook . . . . . . . . . F14 Sprinzeles, Lola, PhD, RN . . Parkinson's Disease Foundation . U28 Sreekantaiah, Chandrika, PhD. University Pathology Reference LaboratoryE3 St. Louis, Yolaine, MD . Bronx-Lebanon Hospital Center . . . . .L2 Stegemann, Alexis. . . . Sjogren's Syndrome Foundation . . . . U30 Stein, Constance, PhD. . SUNY Upstate Medical University . . . .E2 Stein, Jacqueline. . . . Foundation Fighting Blindness . . . . U13 Stellrecht, Kathleen, PhD . . Albany Medical Center. . . . . . F11 Stephenson, Christine, PhD. . IMPATH-HDC . . . . . . . . . . . .E7 Stern, Linda, CSW. . . . Westchester County Medical Center . . .M2 Stetka, Daniel, Ph.D . . Diagenetics . . . . . . . . . . . . . .E6 Stevens, Lisa, MS. . . . St. Luke's-Roosevelt Hospital Center. C45 Stevens-Harvey, Juliann, MS . Children's Hospital of Buffalo . .C3 Stevenson, Nicholai. . . Association for Macular Diseases. . . .U6 Stewart, Doug. . . . . . Alpha-1 Association . . . . . . . . . .U1 Stimmel, Cathy . . . . . MAGIC . . . . . . . . . . . . . . . . U13 Sturdevant, Debbie . . . Cleft Lip and Palate Family Support GroupU7 Sturman, Lawrence S, MD, PhD. New York State Department of HealthB1 Sugre, Mary MD . . . . . Mount Sinai Medical Center. . . . . . P28 Sundaram, Revathy, MD. . Beth Israel Medical Center. . . . . . P25 Sussman, Howard, MD. . . Montefiore Medical Center . . . . . . F12 Sutton, Millicent, MD. . St. Luke's-Roosevelt Hospital Center. P31 Swift, Allen D, PhD. . . Cellmark Diagnostics. . . . . . . . . F18 Swift, Michael, MD . . . New York Medical College. . . . . .T1, T4 Tambini, Lorien, MS. . . Mount Sinai Medical Center. . . . . . C36 Tan, Concepcion V, MD. . Coney Island Hospital . . . . . . . . P19 Tang, Mary, MD . . . . . Fletcher Allen Health Care. . . . . . .G5 Tannenbaum, Hody, MS . . Lincoln Medical & Mental Health CenterC19 Tantravahim Ramana V, PhD . . Cancer Genetics, Inc . . . . . . .E6 Tarr, William E, Jr, MD. Quest Diagnostics, Inc. . . . . . . . F17 Taska, Heidi, MS . . . . Regional Medical Genetics Center. . . C17 Tawil, Rabi, MD. . . . . University of Rochester . . . . . . . .N1 Taylor, Annette K, PhD . Kimball Geneitcs, Inc . . . . . . . . F17 Taylor, Robert R, Jr, MD United Health Services-Wilson Memorial HospitalN1 Tejero, Eva, MS. . . . . Genzyme Genetics. . . . . . . . . . . .D4 Terjanian, Terenig, MD . Staten Island University Hospital . . P33 Thomson, Laura, MS . . . SUNY Upstate Medical University . . . C11 Thornton, Charles A, MD. University of Rochester . . . . . . . .N1 Threatte, Gregory, MD. . SUNY Upstate Medical University . F11, G3 Tobin-Stern, Stephanie, MS. . Bethpage Ob/Gyn. . . . . . . . . D25 Tomczak, Jerzy, DVM. . . Thomas Jefferson University . . . . . F18 Toombs, Meg. . . . . . . New York State Department of Health . .B2 Trotman, Denise. . . . . Sickle Cell Disease Association of AmericaU29 Trunca, Carolyn, PhD . . The Genetics Center . . . . . . . D26, E5 Tulcin, Doris. . . . . . Cystic Fibrosis Foundation. . . . . . U10 Uli, Naveen, MD. . . . . Brookdale Hospital Medical Center . . .L2 Ulysse, René . . . . . . Interfaith Medical Center . . . . . . .D9 Valencia, Diana, MS. . . Ponce School of Medicine. . . . . . . D30 Valvo, Laurie, RN, PNP . Children's Hospital of Buffalo. . . . .P2 VanEenenam, David O, MD. Genesis Health Center . . . . . . . . .N1 van Herreweghe, Barbara. SOFT. . . . . . . . . . . . . . . . . U31 Vargo, Joe . . . . . . . International Rett Syndrome AssociationU16 Vargo, Ro. . . . . . . . International Rett Syndrome AssociationU16 Vélez Garcia, Enrique, MD . . Universidad de Puerto Rico . . . .K3 Velvis, Harm . . . . . . Down Syndrome - Aim High, Inc . . . . U11 Venezia, Richard A, PhD. Albany Medical Center . . . . . . . . F11 Verdaasdonk, Kathleen, MS . . Children's Hospital of Buffalo . .C3 Vesoniaraki, Mary, MD. . Staten Island University Hospital . . P33 Vinciguerra, Vincent, MD North Shore University Hospital . . . P40 Vininsky, Rochelle, MS, CGC . Albert Einstein College of MedicineH8 Vininsky, Rochelle, MS, CGC . White Plains Hospital. . . . . . .H7 Viswanathan, Kusum, MD . Brookdale Hospital Medical CenterO1, P17, R1 Vlahides, George D, MD . Ellis Hospital. . . . . . . . . . . . .P8 Vosatka, Robert, MD. . . New York Presbyterian Hospital. . . . C43 Voter, Karen Z, MD . . . University of Rochester School of MedicineI1 Vultaggion, Joyce. . . . Little People of America. . . . . . . U18 Waful, Jeanne. . . . . . Little People of America. . . . . . . U18 Wagner, Doris. . . . . . American Parkinson Disease Association.U5 Waite, Joyce . . . . . . American Diabetes Association . . . . .U2 Waldman, Charlene. . . . The Paget Foundation for Paget's Disease of Bone and Related Disorders . . . U27 Walker, Elizabeth. . . . March of Dimes Birth Defects FoundationU19 Walker, Patricia, MD . . Saint Vincent Catholic Medical Centers of New YorkI2 Wallace, Fiona, MS . . . Genzyme Genetics. . . . . . . . . . . .D4 Wallerstein, Robert, MD. Hospital for Joint Diseases . . . . . D13 Wallerstein, Robert, MD. New York University Medical Center. . C39 Wang, Jin-Chen, MD . . . Alfigen, Inc. . . . . . . . . . . .E6, G5 Wang, Nancy, PhD . . . . University - Strong Memorial Hospital .E2 Warburton, Dorothy, PhD. New York Presbyterian Hospital. . . . .E4 Ward, Brian, PhD . . . . Myriad Genetic Laboratories . . . . . F17 Warner, Carolyn, MD. . . Erie County Medical Center. . . . . . .N1 Wasserstein, Melissa, MD Mount Sinai Medical Center. . . . . . C35 Weiner, Phyllis, MD. . . The Jamaica Hospital Medical Center . P36 Weinstein, Martha, PhD . Genzyme Genetics. . . . . . . . . .D4, E3 Weiss, Ronald L, MD. . . Associated Regional and University PathologistsF15 Weiss-Burns, Jody, MS. . SUNY at Stony Brook . . . . . . . . . C59 Welch, Karlla, MS. . . . New York Presbyterian Hospital. . . . C43 Welch, Rita. . . . . . . Prader-Willi New York Association . . U29 Wells, Alan H, MD. . . . UPMC Presbyterian . . . . . . . . . . F18 Wexler, Nancy, PhD . . . New York State Psychiatric Institute. D20 White, Bevery, MD. . . . Quest Diagnostics, Inc. . . . . . . . .E8 Widmann, Judith, MA, MS. The New York Hospital-Cornell Medical CenterD17 Wieland, Judith, PhD . . The Genetics Center . . . . . . . . . D26 Wiernik, Peter, MD . . . Our Lady of Mercy Medical Center. . . P16 Wilbur, Lorraine . . . . Institute for Basic Research. . . . . C56 Wilder, Helen C. . . . . Association for Children with Down SyndromeU5 Wilkes, Elaine . . . . . St. Luke's-Roosevelt Hospital Center. P31 Willey, Ann M, PhD, JD . New York State Department of HealthB1, E1, E2, T1 Williams, Cheryl . . . . National Marfan Foundation. . . . . . U25 Williamson, Jennifer, MS The Neurological Institute. . . . . . D13 Williamson, Jennifer, MS New York Presbyterian Hospital. . . . C43 Willner, Judith P, MD. . Mount Sinai Medical Center. . . . . . C35 Wilson, Thomas A, MD . . SUNY at Stony Brook . . . . . . . . . .L3 Winston, Linda . . . . . Crohn's and Colitis Foundation of AmericaU9 Wisch, Nathaniel, MD . . Lenox Hill Hospital . . . . . . . . . .J1 Wisniewski, Krystyna E, MD, PhD. . Institute for Basic Research.T3 Witkin, Steven S, PhD. . Weill Medical College of Cornell UniversityF12 Wold, Lester E, MD . . . Mayo Collaborative Services, Inc. . . F17 Wolf, Robin, MS. . . . . Genezyme Genetics . . . . . . . . . . .D4 Wolfe, Sharon, MS. . . . New York Methodist Hospital . . . . . C27 Wong, Martha S, MD . . . Bronx-Lebanon Hospital. . . . . . . . P12 Wright, Jonathan, MD . . SUNY Upstate Medical University . . . .J1 Yankovsky, Marion. . . . National Tay-Sachs and Allied Diseases AssociationU27 Younger, David, MD . . . New York University Medical Center. . .N3 Yung, Jar-Fee, PhD . . . IMPATH. . . . . . . . . . . . . . . . .E4 Zajac, Laura, MS . . . . New York University Medical Center. . C39 Zak-Aptekar, Monika, MS. Long Island College Hospital. . . . . D11 Zalusky, Ralph, MD . . . Beth Israel Medical Center. . . . . . P25 Zaroulis, Charles, MD. . Staten Island University Hospital . . P33 Zarrabi, MH, MD. . . . . Northport Veteran Affairs Medical CenterP42 Zaslav, Ann-Leslie, PhD. North Shore Long Island Jewish Medical CenterE5, S1 Zellers, Nancy, MS . . . Institute for Basic Research. . . . . C55 Zhong, Nan, MD . . . . . Institute for Basic Research. . . . . C55 Zinberg, Randi, MS . . . Mount Sinai Medical Center. . . . . . C36 Zucker, S, MD. . . . . . Northport Veteran Affairs Medical CenterP42 GENES Directory 2001 INDEX OF INSTITUTIONS Alpha-1 Association. . . . . . . . . . . . . . . . . . . . . . .U1 Acoustic Neuroma Association . . . . . . . . . . . . . . . . . .U1 Adult Sickle Cell Patients Support Group . . . . . . . . . . . . . See Children's Hospital of Buffalo - C5 Albany Medical CenterC15, E2, F11, G3, I1, J1, K1, L1, M2, N2, O1, P7, R1 Albert Einstein College of Medicine. . . . . . . . . . . . H8, P11 Alfigen. . . . . . . . . . . . . . . . . . . . . . . . . . .E6, G5 All City Family Health CenterSee The Brooklyn Hospital Center - C24 American Diabetes Association. . . . . . . . . . . . . . . . . .U2 American Foundation for the Blind. . . . . . . . . . . . . . . .U2 American Lung Association. . . . . . . . . . . . . . . . . . . .U2 American Medical Laboratories. . . . . . . . . . . . . . . .E6, G5 American Parkinson Disease Association . . . . . . . . . . . . .U4 Amyotrophic Lateral Sclerosis Association. . . . . . . . . . . .U5 Anencephaly Support Network. . . . . . . . . . . . . . . . . . .U5 Associated Regional and University Pathologists. . . . . . F15, G5 Association for Children with Down Syndrome. . . . . . . . . . .U5 Association for Glycogen Storage Disease . . . . . . . . . . . .U6 Association for Macular Diseases . . . . . . . . . . . . . . . .U6 Association of Families and Friends of Children with Limb DisordersU6 Athena Diagnostics . . . . . . . . . . . . . . . . . . . . . . F15 Baylor College of Medicine . . . . . . . . . . . . . . . . . . F15 Baylor University Medical Center . . . . . . . . . . . . . . . F15 Bellevue Maternity Hospital. . . . . . . . . . . . . . . . . . .G3 Bellevue Hospital. . . . . . . . . . . . . . . . . . . . . G4, P30 Bellevue Hospital. . .See New York University Medical Center - C40 Bellevue Women's Health Care Plus. . . . . . . . . . . . . . . .H6 Beth Israel Medical Center . . . . . . . . . . . .C29, H9, P25, S1 Bethpage Ob/Gyn. . . . . . . . . . . . . . . . . . . . . . . . D25 Betty Shabbaz Community Family Planning Center . . . . . . . . . . See The Brooklyn Hospital Center - C24 Binghamton Genetic Counseling Program. . . . . . . . . . . . . C13 The Blood Center of Southeastern Wisconsin . . . . . . . . . . F15 Blythedale Children's Hospital . . . . . . . . . . . . . . . . .D3 Blythedale Children's Hospital See Montefiore Medical Center - C22 Booth Memorial Medical Center. . . . . . . . . . . . . . . . . P34 Boston University Medical School . . . . . . . . . . . . . E6, F15 Bronx-Lebanon Hospital . . . . . . . . . . . . . . . . . . L2, P12 Bronx-Lebanon Hospital . . . . See Montefiore Medical Center - C22 Bronx Municipal Hospital (AECOM) . . . . . . . . . . . . . . . Q18 Bronx Municipal Hospital CenterSee Montefiore Medical Center - C22 Bronx Veteran Affairs Medical Center . . . . . . . . . . . . . P13 Brookdale Hospital Medical Center. . . . . D7, E3, L2, O1, P17, R1 Brookdale Hospital Medical CenterSee Maimonides Medical Center - C25 The Brooklyn Hospital Center . . . . . . . . . . . . .C23, K1, P18 The Brooklyn Hospital Center . . . . . See New York Hospital - D18 The Brooklyn Hospital Center . . . . . . . . . . . . . . . . . . . See Sickle Cell Disease Parent's Support Group - U29 Brownsville Clinic . . . . See SUNY Downstate Medical Center - D12 Cancer Genetics. . . . . . . . . . . . . . . . . . . . . . . . .E6 Camary Statewide Services. . . . . . . . . . . . . . . . . . . .U6 Canavan Foundation . . . . . . . . . . . . . . . . . . . . . . .U6 Capital District Sickle Cell Disease Foundation. . . . . . . . .U6 Caribbean House. . . . . . .See The Brooklyn Hospital Center - C24 Cattaraugus County Health Department . . . . . . . . . . . . . . . See Children's Hospital of Buffalo - C4 Cellmark Diagnostics . . . . . . . . . . . . . . . . . . . . . F18 Center for Jewish Genetic DiseasesSee Mount Sinai Medical Center - C37 Center for Neuromuscular and Developmental Disorders . . . . . . . See Hospital for Joint Diseases - D14 Center for Parkinson's Disease and Other Movement Disorders. . . . . . . .Neurological Institute - D13 Central Suffolk Hospital . .See Nassau County Medical Center - C57 Centro Cardiovascular de Puerto Rico y del Caribe. . . . . . . .I3 Charcot-Marie-Tooth Association. . . . . . . . . . . . . . . . .U6 Chautauqua County Health DepartmentSee Children's Hospital of Buffalo - C4 Chediak-Higashi Syndrome . . . . . . . . . . . . . . . . . . . .U7 CHERUB . . . . . . . . . . . . . . . . . . . . . . . . . . . . .U6 Children's Defense Fund. . . . . . . . . . . . . . . . . . . . .R1 Children's Hospital at Strong. . . . . . . . . . . . . . . . . .P5 Children's Hospital of Buffalo .C3, G3, I1, J1, L1, M1, N1, P2, R1 Children's Hospital of Buffalo . . . . . . . . . . See CHERUB - U6 Children's Hospital of Buffalo . . See Pregnancy Risk Network - Q2 Children's Hospital of New Jersey at Newark. . . . . . . . . . .S1 Children's Hospital of Philadelphia. . . . . . . . . . . . . . F15 Children's PKU Network . . . . . . . . . . . . . . . . . . . . .U7 Chinatown Health Clinic. . . . . . . . See New York Hospital - D18 City Hospital at Elmhurst. . . . . . . . . . . . . . .C49, K2, P35 Cleft Lip and Palate Family Support Group. . . . . . . . . . . .U7 Clinigene Medical Specialty Laboratory . . . . . . . . . . F14, G4 Columbia University. . . . . . . . . . . . . . . . . . . . . . F12 Columbia-Presbyterian Medical Center . . . . . . . I2, K2, N2, P26 Columbia-Presbyterian Medical Center . . . . . . . See SCOSH - U30 Community Action of Bedford-Stuyvesant/Community Family Planning Center See The Brooklyn Hospital Center - C24 Community General Hospital . . See Regional Medical Genetics - C18 Coney Island Hospital. . . . . . . . . . . . . . . . . . . . . P19 Cooley's Anemia Foundation . . . . . . . . . . . . . . . . . . .U7 Cooley's Anemia International. . . . . . . . . . . . . . . . . .U8 Cornelia de Lange Syndrome . . . . . . . . . . . . . . . . . . .U8 Cornell Medical College. . . . . . . . . . . . . . . . . . . . F12 Craniofacial Center of Western New YorkSee Pregnancy Risk Network - Q3 Crohn's and Colitis Foundation of America. . . . . . . . . . . .U9 CUNY Graduate Center . .See National Self-Help Clearinghouse - U27 Cystic Fibrosis Foundation . . . . . . . . . . . . . . . . . . U10 Danbury Hospital . . . . . . . . . . . . . . . . . . . . . . . .E6 DEBRA of America . . . . . . . . . . . . . . . . . . . . . . . U12 Developmental Disabilities Prevention Program. . . . . . . . . U11 Diagenetics. . . . . . . . . . . . . . . . . . . . . . . . . . .E6 Dianon Systems . . . . . . . . . . . . . . . . . . . . E6, F15, G5 Don Monti Cancer Center. . . . . . . . . . . . . . . . . . . . . . See North Shore University Hospital at Glen Cove - P41 Dor Yeshorim . . . . . . . . . . . . . . . . . . . . . . . . . .D8 Down Syndrome - Aim High . . . . . . . . . . . . . . . . . . . U11 Down Syndrome Network of Cayuga County . . . . . . . . . . . . U11 The Dysautonomia Foundation. . . . . . . . . . . . . . . . . . U11 Dystonia Medical Research Foundation . . . . . . . . . . . . . U11 Dystrophic Epidermolysis Bullosa Research Association of AmericaU12 East New York Clinic . . . See SUNY Downstate Medical Center - D12 Ellis Hospital . . . . . . . . . . . . . . . . . . . . . . . . .P8 Erie County Medical Center . . . . . . . . . . . . . . . . .N1, P3 Esoterix Oncology. . . . . . . . . . . . . . . . . . . E6, E7, F16 Eunice Kennedy Shriver Center. . . . . . . . . . . . . . . . . F16 Fanconi's Anemia Research Fund Support Group . . . . . . . . . U12 Fletcher Allen Health Care . . . . . . . . . . . . . . . . .E7, G5 Fort Greene Maternal/Infant Care Center. . . . . . . . . . . . . . See The Brooklyn Hospital Center - C24 Forward Face . . . . . . . . . . . . . . . . . . . . . . . . . U12 Foundation Fighting Blindness. . . . . . . . . . . . . . . . . U12 Foundation for Children's Growth . . . . . . . . . . . . . . . U13 Fragile X Association of New York. . . . . . . . . . . . . . . U13 Fragile X Resource Center for Upstate New York . . . . . . . . U13 Genecare . . . . . . . . . . . . . . . . . . . . . . . . . . . .E7 Gene Logic . . . . . . . . . . . . . . . . . . . . . . . . . . F16 GENES. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .R1 Genesis Health Center. . . . . . . . . . . . . . . . . . . . . .N1 Genetic Alliance . . . . . . . . . . . . . . . . . . . . . . . U13 Genetic Diagnostic Laboratories. . . . . . . . . . . . . . . . .E2 The Genetics Center. . . . . . . . . . . . . . . . . . . . D26, E5 Genetics & IVF Institute . . . . . . . . . . . . . . . E7, F16, G5 Genzyme Genetics . . . . . . . . . . . . . . . D4, E3, E7, F16, G5 George Jervis Clinic . . . .See Institute for Basic Research - C55 Gilda Radnor Familial Ovarian Cancer Registry. . . . . . . . . . . See Roswell Park Cancer Institute - H2 Good Samaritan Hospital. . . . . . . . . . . . . . . . . . . . P38 Guardians of Hydrocephalus Research Foundation . . . . . . . . U14 Handicapped Children's Center. . SUNY Upstate Medical Center - C12 Harlem Hospital Center . . . . . . . . . . . . . . . . . .C31, P27 Harlem Hospital Center . . . . .See Sickle Cell Family Group - U30 Heart Share. . . . . . . . . . . . . . . . . . . . . . . . . . U14 Helen Hayes Hospital . . . . . . . . . . . . . . . . . . . . . .N2 Hemochromatosis Research Foundation. . . . . . . . . . . . . . U14 Hemophilia Association of New York . . . . . . . . . . . . . . U14 Hemophilia Center of Rochester . . . . . . . . . . . . . . . . . . See University of Rochester School of Medicine - C8 Hemophilia Center of Western New York. . . . . . . . . . . . . .K1 Hermansky-Pudlak Syndrome. . . . . . . . . . . . . . . . . . . U14 Horton Memorial Hospital . . . See Regional Medical Genetics - C18 Hospital for Joint Diseases. . . . . . . . . . . . . . . . D14, N2 Hospital for Joint DiseasesSee New York University Medical Center - C40 Hospital for Special Surgery . . . . . See New York Hospital - D18 House of the Good Samaritan. . . . . . . . . . . . . . . . . . .I1 House of the Good Samaritan. See SUNY Upstate Medical Center - C12 Huntington Hospital.See North Shore University Hospital - D27, H16 Huntington's Disease Society of America. . . . . . . . . . . . U14 IBR Specialty Clinical Laboratories. . . . . . . . . . . . E5, F14 Immune Deficiency Foundation . . . . . . . . . . . . . . . . . U15 IMPATH . . . . . . . . . . . . . . . . . . . . . . . . . . .E4, E8 Institute for Basic Research . . . . . . . . . . . C55, S2, T3, T4 Institute for Genetic Medicine . . . . See New York Hospital - D19 Interfaith Medical Center. . . . . . . . . . . . . . . D9, O2, P20 International Rett Syndrome Association. . . . . . . . . . . . U16 Interscience Diagnostic Labs . . . . . . . . . . . . . . . . . .E3 ITxM Diagnostics . . . . . . . . . . . . . . . . . . . . . . . F16 Jacobi Hospital. . . . . . . . See Montefiore Medical Center - C22 The Jamaica Hospital . . . . . . . . . . . . . . . . . . . . . P36 The Jamaica HospitalSee North Shore Long Island Jewish Medical Center - C52 Jesse Nash Health Center . See Children's Hospital of Buffalo - C4 Johns Hopkins Hospital . . . . . . . . . . . . . . . . . . . . F16 Juvenile Diabetes Foundation . . . . . . . . . . . . . . . . . U16 Kaleida Health Children's Genetic Laboratory . . . . . . . E2, F11 Kimball Genetics . . . . . . . . . . . . . . . . . . . . . . . F17 Kings County Hospital. . . . . . . . . . . . . . . . . . . . . P23 Kingston Hospital. . . . . . . See Regional Medical Genetics - C18 La Providencia . . . . . . .See The Brooklyn Hospital Center - C24 Laboratories for Genetic Services. . . . . . . . . . . . . . . .E7 Laboratory Corporation of America Holdings . . . . . . E7, F17, G5 Laurence-Moon-Bardet-Biedl Syndrome Network. . . . . . . . . . U17 Lenox Hill Hospital. . . . . . . . . . . . . . . . . . . . . . .J1 Lenox Hill Hospital. . . See Strang Cancer Prevention Center - H13 Lifecare Center. . . . . . . . . . . See SUNY at Stony Brook - C60 Lincoln Medical and Mental Health Center . . . . . . .C19, O1, P14 Lincoln Medical and Mental Health CenterSee New York Hospital - D18 Little People of America . . . . . . . . . . . . . . . . . . . U17 Long Island College Hospital . . . . . . . . . . . . . D11, I2, N2 Long Island Fragile X Alliance . . . . . . . . . . . . . . . . U18 Lowe's Syndrome Association. . . . . . . . . . . . . . . . . . U18 Lutheran Medical Center. . . . See Maimonides Medical Center - C25 Lyndon Baines Johnson Family Health Center . . . . . . . . . . . . See Interfaith Medical Center - D10 MAGIC. . . . . . . . . . . . . . . . . . . . . . . . . . . . . U13 Maimonides Medical Center. . . . . . . . . . . . .C25, J1, L2, P21 Malignant Hyperthermia Association of the United States. . . . U18 Manhattan Avenue Clinic. . .See The Brooklyn Hospital Center - C24 March of Dimes Birth Defects Foundation. . . . . . . . . . . . U19 Martin Luther King Health CenterSee Nassau County Medical Center - C57 Mary Immaculate Hospital . . . . . . . . . . . . . . . . . . . P37 Mary M. Gooley Hemocenter. . . . . . . . . . . . . . . . . . . .K1 The Maternal and Infant Care Project . . . . . . . . . . . . . . . See North Shore Long Island Jewish Medical Center - C52 Mayo Collaborative Services. . . . . . . . . . . . . . E8, F17, G5 Memorial Hospital-Sloan Kettering Cancer Center. .E4, F12, H10, T2 Mercy Street Medical Hospital.See New York Downtown Hospital - D16 Metropolitan Hospital Center . . . . . . . . . . . . . . . . . C33 Mid-Hudson Valley Down Syndrome Congress . . . . . . . . . . . U20 ML4 Foundation . . . . . . . . . . . . . . . . . . . . . . . . U20 MMC Developmental Center . . . See Maimonides Medical Center - C25 Moebius Syndrome Foundation. . . . . . . . . . . . . . . . . . U20 Montefiore Medical Center. .C21, E3, F11, F12, G4, L1, N2, P15, S2 Montefiore Medical Center See Blythedale Children's Hospital - D3 Montefiore Center for Congenital Disorders . . . . . . . . . . . . See Montefiore Medical Center - C21 Morrisania D&TC.See Lincoln Medical and Mental Health Center - C19 Mount Sinai Medical Center . . . . . . . . . . . . . . . . . . . . C35, E4, F12, G4, I2, J2, K2, L2, M2, N2, P28, R2 Mount Sinai Medical Center . . . . . . . . . . . See We Move - U33 The Movement Disorder Society. . . . . . . . . . . . . . . . . U21 Muscular Dystrophy Association of America. . . . . . . . . . . U21 Myelomeningocele Parent Support Group. . . . . . . . . . . . . U22 Myoclonus Families United. . . . . . . . . . . . . . . . . . . U22 Myriad Genetic Laboratories. . . . . . . . . . . . . . . . . . F17 Nalitt Cancer InstituteSee Staten Island University Hospital - H14, P33 Narcolepsy Network . . . . . . . . . . . . . . . . . . . . . . U22 Nassau County Medical Center . . . . C57, E5, F14, K2, L3, N3, P39 National Adrenal Diseases Foundation . . . . . . . . . . . . . U22 The National Center for the Study of Wilson's Disease. . . . . U22 National Down Syndrome Society . . . . . . . . . . . . . . . . U23 National Foundation for Facial Reconstruction. . . . . . . . . U23 National Foundation for Jewish Genetic Diseases. . . . . . . . U23 National Gaucher's Disease Foundation. . . . . . . . . . . . . U23 National Hemophilia Foundation . . . . . . . . . . . . . . . . U23 National Incontentia Pigmenti Foundation . . . . . . . . . . . U23 National Kidney Foundation . . . . . . . . . . . . . . . . . . U23 National Marfan Foundation . . . . . . . . . . . . . . . . . . U24 National Mucopolysaccharidosis Society . . . . . . . . . . . . U25 National Multiple Sclerosis Society. . . . . . . . . . . . . . U25 National Neurofibromatosis Foundation. . . . . . . . . . . . . U26 National Organization for Rare Disorders . . . . . . . . . . . U26 National Self-Help Clearinghouse . . . . . . . . . . . . . . . U27 National Tay-Sachs and Allied Diseases Association . . . . . . U27 Neo Gen Screening. . . . . . . . . . . . . . . . . . . . . . . F17 Neurological Institute . . . . . . . . . . . . . . . . . . D13, T2 Neurological Institute . . See The Movement Disorder Society - U21 New Bedford Maternal/Infant Care Center. . . . . . . . . . . . . . See Interfaith Medical Center - D10 New Island Hospital. . . . .See Winthrop University Hospital - C61 New York Downtown Hospital . . . . . . . . . . . . . . . . . . D16 New York Downtown HospitalSee New York University Medical Center - C40 New York Hospital-Cornell Medical Center . . . . . . . . . . . . . D17, E4, F13, G4, K2, N2, P29, S2, T2 New York Hospital-Cornell Medical Center . . . . . . . . . . . . See Mount Sinai Medical Center - C36 New York Hospital-Cornell Medical Center . . . . . . . . . . . . . See Strang Cancer Prevention Center - H13 New York Hospital-Queens Division. . . See New York Hospital - D18 New York Medical College . . . . . . . . . . . . . . . P10, T1, T4 New York Methodist Hospital. . . . . . . . . . . . . .C27, E3, P22 New York Methodist Hospital. . . . . . . . . . . . See SCORE - U30 New York Presbyterian Hospital . . . . . . . . . .C43, E4, F13, G4 New York State Department of Health. . .B1, C1, E2, F3, G3, R1, T1 New York State Division of Chronic Disease Prevention and Adult HealthB2 New York State Genetic Services Program. . . . . . . . . . . . .C1 New York State Newborn Screening Program . . . . . . . . . . . .B2 New York State Psychiatric Institute . . . . . . . . . . . . . D20 New York University Medical CenterC39, E4, F13, K2, L2, N3, P30, T3 Niagara Family Pediatrics. See Children's Hospital of Buffalo - C4 NORD . . . . . . . . . . . . . . . . . . . . . . . . . . . . . U26 North Central Bronx Hospital . See Montefiore Medical Center - C22 North Country Children's ClinicSee SUNY Upstate Medical Center - C12 North Shore Long Island Jewish Medical Center. . . . . . . . . . . C51, E6, F14, H15, I2, J2, K2, L2, N3, S1 North Shore University HospitalD27, E5, F14, H16, J2, K3, L3, M2, P40 North Shore University Hospital at Glen Cove . . . . . . . . . P41 Northport Veteran Affairs Medical Center . . . . . . . . . . . P42 NTD Laboratories . . . . . . . . . . . . . . . . . . . . . . . .G4 Nyack Hospital . . . . . . . . See Regional Medical Genetics - C18 NYSARC . . . . . . . . . . . . . . . . . . . . . . . . . . . . U27 OB/GYN Associates of Northern New YorkSee SUNY Upstate Medical Center - C12 Oberia B. Dempsey Multiservice Center. . . . . . . . . . . . . . . See Sickle Cell Anemia Foundation of Greater New York - U29 Organization of Teratology Information Services. . . . . . . . . . . . See Pregnancy Risk Network - Q2 OTIS . . . . . . . . . . . . . . . See Pregnancy Risk Network - Q2 Our Lady of Mercy Medical Center . . . . . . . . . . . . . . . P16 The Paget Foundation for Paget's Disease of Bone and Related DisordersU27 Parent Assistance Committee on Down Syndrome . . . . . . . . . U27 Parent to Parent of New York State . . . . . . . . . . . . . . U27 Parents Accepting Their Children's Health (PATCH). . . . . . . U27 Parkinson's Disease Foundation . . . . . . . . . . . . . . . . U28 Parkinson's Support Group of Syracuse, NY. . . . . . . . . . . U28 Parkinson's Support Group of Upstate New York. . . . . . . . . U28 Parkinson's Wellness Group . . . . . . . . . . . . . . . . . . U28 PATCH. . . . . . . . . . . . . . . . . . . . . . . . . . . . . U27 Pediatric Specialty Lab. . . . . . . . . . . . . . . . . . . . F11 People . . See Developmental Disabilities Prevention Program - U11 Perinatal Environmental and Drug Exposure Consultation Service .Q4 Phelps Memorial Hospital Center. . . . . . . . . . . . . . . . .D6 PKU Association. . . . . . . . . . . . . . . . . . . . . . . . U28 Planned Parenthood of Oneonta. . . See Albany Medical Center - C16 Polycystic Kidney Research Foundation. . . . . . . . . . . . . U28 Ponce School of Medicine . . . . . . . . . . . . . . . . . . . D30 Prader-Willi Alliance of New York. . . . . . . . . . . . . . . U29 Prader-Willi New York Association. . . . . . . . . . . . . . . U29 Pregnancy Risk Network . . . . . . . . . . . . . . . . . . . . .Q2 Project Hope . . . . . . . . . . . . . . . . . . . . . . . . . U29 Prometheus Laboratories. . . . . . . . . . . . . . . . . . . . F17 Putnam Community Hospital. . . See Regional Medical Genetics - C18 Queens Hospital Center . . . . . . . . . . . . . . . . . . . . C53 Queens Sickle Cell Advocacy Network Partners in Health . . . . U29 Quest Diagnostics. . . . . . . . . . . . . . . . . E8, F17, G5, G6 Ralph Avenue Family Health CenterSee Interfaith Medical Center - D10 Regional Medical Genetics Center . . . . . . . . . . . . . . . C17 Restoration Family Health CenterSee Interfaith Medical Center - D10 Robert E. Warner Rehabilitation CenterSee Pregnancy Risk Network - Q3 Rochester General Hospital . . . . . . . . . . . . . . . . . . .P4 The Rockefeller University Hospital. . . . . . . . . . E5, F14, T3 Rockland County Health Center. See Regional Medical Genetics - C18 Roswell Park Cancer Institute. . . . . . . .E2, H2, T1, T2, T3, T4 Rusk Institute of Rehabilitation Medicine. . . . . . . . . . . . . See Charcot-Marie-Tooth Association - U6 Rusk Institute of Rehabilitation Medicine. . . . . . . . . . . . . See New York University Medical Center - C40 St. Barnabas Hospital. . . . . . . . . See New York Hospital - D18 St. Catherine of Sienna Hospital . . . . . . . . . . . . . . . . . See American Parkinson Disease Association - U5 St. Charles Hospital and Rehabilitation Center . . . . . . . . .N3 St. Charles Hospital . . . . . . . . See SUNY at Stony Brook - C60 St. Francis de Sales School for the Deaf . . . . . . . . . . . . . See The Brooklyn Hospital Center - C24 St. Louis University . . . . . . . . . . . . . . . . . . . . . F17 St. Luke's-Roosevelt Hospital Center . . . . . . C45, H12, O2, P31 St. Mary's Hospital for Children . . . . . . . . . . . . . . . D24 St. Peter's Hospital . . . . . . . . . . . . . . . . . . . . . .P9 St. Peter's Hospital . . . . . . . See Albany Medical Center - C16 St. Vincent Catholic Medical Centers of New YorkC47, I2, L2, P32, R1, S2 St. Vincent Catholic Medical Centers of New York . . . . . . . . . See Institute for Basic Research - C56 San Jorge Children's Hospital. . . . . . . . . . . . . . . . . . . See March of Dimes Birth Defects Foundation - U20 Schneider Children's Hospital. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . See North Shore Long Island Jewish Medical Center - C51, H15, S1 SCORE. . . . . . . . . . . . . . . . . . . . . . . . . . . . . U30 SCOSH. . . . . . . . . . . . . . . . . . . . . . . . . . . . . U30 Scripps Reference Laboratory . . . . . . . . . . . . . . . . . F17 Segundo Ruiz Belvis D&TC . . . . . . . . . . . . . . . . . . . . . See Lincoln Medical and Mental Health Center - C19 Sickle Cell Anemia Foundation of Greater New York. . . . . . . U29 Sickle Cell Disease Association of America . . . . . . . . . . U29 Sickle Cell Disease Parent Association . . . . . . . . . . . . U29 Sickle Cell Disease Parent's Support Group . . . . . . . . . . U29 Sickle Cell Family Group . . . . . . . . . . . . . . . . . . . U30 Sickle Cell Organization for Self Help . . . . . . . . . . . . U30 Sickle Cell/Thallasemia Support Group. . . . . . . . . . . . . U30 Sjogren's Syndrome Foundation. . . . . . . . . . . . . . . . . U30 SOFT . . . . . . . . . . . . . . . . . . . . . . . . . . . . . U31 South Brooklyn Clinic . . .See The Brooklyn Hospital Center - C24 South Shore Hospital . . . . . See Regional Medical Genetics - C18 Specialty Children's Center. . . .See University of Rochester - C9 Specialty Laboratories . . . . . . . . . . . . . . . . . . .E8, G6 Spina Bifida Association . . . . . . . . . . . . . . . . . . . U30 Staten Island University Hospital. . . . . . . . . . D22, H14, P33 Staten Island University HospitalSee Institute for Basic Research - C56 Strang Cancer Prevention Center. . . . . . . . . . . . . . H13, T2 Suffolk County Health Centers. . . . See SUNY at Stony Brook - C60 SUNY at Buffalo. . . . . . . . . . See Pregnancy Risk Network - Q3 SUNY at Stony Brook. C59, E5, F14, G4, I2, J2, K3, L3, M2, N3, P44 SUNY Downstate Medical Center. . . . . . . . .D12, L2, O2, P23, S2 SUNY Upstate Medical CenterC11, E2, F11, G3, H5, I1, J1, K1, L1, N1, P6 SUNY Upstate Medical CenterSee Binghamton Genetic Counseling Program - C13 SUNY Upstate Medical Center. . . . . . . . . . . . . . . . . . . . See Velo-Cardio-Facial Syndrome Educational Foundation - C13 Support Group for Monosomy 9p. . . . . . . . . . . . . . . . . U31 Support Organization for Trisomy 18/13 . . . . . . . . . . . . U31 Terrance Cardinal Cook Health Care Center. . . . . . . . . . . . See Metropolitan Hospital Center - C33 Thalassemia Action Group . . . . . . . . . . . . . . . . . . . U31 Thomas Jefferson University. . . . . . . . . . . . . . . . . . F18 Throop Avenue Family Health CenterSee Interfaith Medical Center - D10 Tisch Hospital . . . .See New York University Medical Center - C40 Tourette Syndrome Association. . . . . . . . . . . . . . . . . U31 Tri-Community Health Center.See Nassau County Medical Center - C57 Turner's Syndrome Society. . . . . . . . . . . . . . . . . . . U32 United Health Services-Wilson Memorial Hospital. . . . . . .K1, N1 United Cerebral Palsy Association of New York State. . . . . . U33 Universidad de Puerto Rico . . . . . . . . . . . . . . . . D32, K3 University of Medicine & Dentistry of New Jersey . . . . . . . .E8 University of Rochester School of MedicineC7, F11, H4, O1, Q4, T3, T4 University of Rochester/Strong Memorial Hospital . . . . . . . . . . . . . E2, F11, G3, I1, L1, M1, N1 University of Washington . . . . . . . . . . . . . . . . . . . F18 University Pathology Reference Laboratory. . . . . . . . . . . .E3 UPMC Presbyterian. . . . . . . . . . . . . . . . . . . . . . . F18 Vassar Brothers Hospital . . . See Regional Medical Genetics - C18 Velo-Cardio-Facial Syndrome Educational Foundation . . . . . . U33 Veterans Administration Extended Care Center . . . . . . . . . . . See North Shore Long Island Jewish Medical Center - C52 Virgin Island Comprehensive Care Program . . . . . . . . . . . P46 Von Hippel Lindau (VHL) Family Alliance. . . . . . . . . . . . U33 Wadsworth Center . . . . . . . . . . . . . . . . . .B1, E1, F3, G1 We Move . . . . . . . . . . . . . . . . . . . . . . . . . . . U33 Weill Medical College of Cornell University. . . . . . . . F12, T1 West Islip Pediatric Subspecialty Group. . . . . . . . . . . . . . See North Shore University Hospital - D27 West Side Health Center. . See Children's Hospital of Buffalo - C4 Westchester County Medical Center. . . . .F14, I2, L1, M2, P12, R1 Westchester Institute for Human Development. . . . . . . . . . . . See Myelomeningocele Parent Support Group - U22 Western New York Genetics Consortium Advisory Group. . . . . . . . See Children's Hospital of Buffalo - C5 Western New York PKU Parent's GroupSee Children's Hospital of Buffalo - C5 White Plains Hospital. . . . . . . . . . . . . . . . . . . . . .H7 White Plains Hospital. . . . . . . . . . . See Peggy Blattner - D2 Williamsburg Family Health CenterSee The Brooklyn Hospital Center - C24 Williamsburg Maternal/Infant Care Center . . . . . . . . . . . . . See The Brooklyn Hospital Center - C24 Wilson's Disease Laboratory. . . . . . . . . . . . . . . . . . F14 Winthrop University Hospital . . . . . . . . . . .C61, E6, L3, P45 Women and Infants Hospital . . . . . . . . . . . . . . . . . . .G6 Woodhull Medical Center. . . . . . . . . . . . . . . . . . . . P24 Worldwide Education and Awareness for Movement Disorders . . . U33 Wycoff Heights Medical Center. . . . . . . . . . . . . . . .D4, E4 Wycoff Heights Medical CenterSee North Shore University Hospital - H16 Xeroderma Pigmentosum Society. . . . . . . . . . . . . . . . . U33