NYMAC
(New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services)
About NYMAC
NYMAC Region
NYMAC (New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services) was established in September 2004 as one of seven regional collaboratives in the country funded by the Genetic Services Branch in the Health Resources and Services Administration (HRSA)'s Maternal and Child Health Bureau. The charge of this group is to ensure that individuals with heritable disorders and their families have access to quality care and appropriate genetic expertise and information in a region which includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia. The Wadsworth Center, New York State Department of Health is the lead institution for this project.
- NYMAC Needs Assessment and Plan
- NYMAC Brochure
- NYMAC Directory of Genetic and Specialty Care Services
- NYMAC State Specific Resources for People with Special Health Care Needs
The organizational structure of NYMAC includes the Executive Committee, Advisory Council and the Project Staff. Much of the work of NYMAC is done through Project Teams and subcontracts.
The Executive Committee includes the principal investigator/director, co-principal investigator/director and project manager - this committee is ultimately responsible for all activities of the collaborative.
The Advisory Council (AC) incorporates expertise from state newborn screening, Title V and Children with Special Health Care Needs programs; clinical genetic, specialty care and teratogen service providers; clinical genetic testing laboratories, clinical genetics and genetic counseling training programs; medical insurers; primary medical care providers; professional organizations, consumer organizations and individual patients and their families to provide direction to the project. Ideally, at least three people from each state serve on the AC, selected for their expertise in the range of services listed.
The Project Staff includes a project coordinator, a patient and family coordinator and an evaluation consultant. The coordinators are responsible for day-to-day activities of NYMAC. The evaluation consultant develops tools NYMAC uses to ensure progress in its mission and goals, with periodic review to ensure that progress is made.
NYMAC periodically sponsors educational symposia or conferences. View a listing of the educational events.
Periodically and as projects are identified, subcontracts are awarded to individuals or organizations, usually based on competitive applications. Requests for Applications (RFAs) are posted on the Health Research, Inc. website (www.hrinet.org) as available.
Participation in NYMAC requires an interest in genetics and/or newborn screening and the willingness to contribute time and effort towards accomplishing its goals and objectives. As people interested in people with special health care needs are identified, they are added to our mailing list. They may be sent a survey designed to gather demographic information and specific interests in NYMAC's objectives and projects, which allow NYMAC to gather information about the distribution and provision of services within the region and develop tools and solutions that will allow for equal access to services across the eight states.
If you would like to learn about how to get involved, please Contact NYMAC.