NYMAC
(New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services)
NYMAC Collaborative
NYMAC States
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 develop a regional approach to address the maldistribution of genetic resources in the New York-Mid-Atlantic 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.
The organizational structure of NYMAC includes the Executive Committee, Advisory Council, the Project Staff, seven Work Groups and twelve case management NYMAC Subcontracts.
The Executive Committee includes the principal investigator, co-principal investigator and project director - 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. Three people from each state were asked to serve on the AC, selected for their expertise in the range of services listed.
The Project Staff includes two project coordinators and a project assistant, and is responsible for coordinating the work groups and for the day-to-day activities of NYMAC.
Work Groups were established to focus on each objective of this project. Membership in the work groups includes interested genetics/newborn screening/public health professionals and consumers from each state. There are three levels of membership: representatives and alternates (with a chair identified from this body), and general members. Representatives, alternates and active general members are invited to attend face-to-face meetings. All members are welcome and encouraged to participate in conference calls. Detailed information about the work groups can be accessed through the NYMAC Work Groups link.
There were twelve subcontracts awarded to specialty care centers throughout the region, competitively selected from applications received Spring 2005 for the period July 1, 2006 - June 30, 2007. These subcontracts are for development of case management systems to track children identified by the state newborn screening programs. The list of subcontractors can be accessed through the NYMAC Subcontracts link.
In addition to the activities of the individual work groups, NYMAC will periodically sponsor educational symposia or educational sessions. View a listing of the educational events here.
Participation in NYMAC requires only 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 genetics and newborn screening are identified, they are sent a survey instrument designed to gather demographic information and interest in NYMAC's objectives. These objectives 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.