Resources by Condition or Disability

The NYMAC region includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Puerto Rico, US Virgin Islands, Virginia, and West Virginia.
Our network of family groups, health care providers, public health groups, and other partners work together toward a goal of making it easier for families to connect to the genetic services and information they need.

NYMAC is led by genetics providers from the NYS Department of Health, John Hopkins University, the University of Pittsburgh, the Ferre Institute and evaluators from RTI International. Our region includes the District of Columbia, Delaware, Maryland, New Jersey, New York, Pennsylvania, Puerto Rico, US Virgin Islands, Virginia, and West Virginia. NYMAC is one of seven Regional Genetics Networks across the country funded by a federal (HRSA) grant.

New DNA changes: Understanding how new changes in the DNA 9de novo) can lead children having new DNA changes and differences that their parents don’t have An infographic that explains changes in DNA (de novo)

Variants of Uncertain Significance (VUSs): Understanding an uncertain genetic test result An infographic that explains VUSs

Genetic Changes: How changes in the DNA can lead to differences among people An infographic that explains Genetic Changes.

The Genetic Recipe: Understanding DNA, genes, chromosomes, and the genome An Infographic that explains genetics and DNA

information for Washington D.C., Virginia and Maryland.

Offers resources and referrals to help people and their families cope with the problems that occur with TS. Membership includes individuals, families, relatives and medical and allied professionals working in the field

A great resource that provides high quality, confidential information and referral services with chapters in every state.

A nonprofit organization that is founded, supported and run by parents. Our children are affected by a wide range of chromosome disorders, including deletions, duplications, trisomies, inversions, translocations and rings

A source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide. Membership of Unique is free.

Help people with disabilities, family members, friends and others become advocates themselves

Affiliated with The Arc of the United States and serving as the state chapter in Virginia, they help people with disabilities, family members, friends and others become advocates themselves