Family Voices of New York (FV of NY) - provides information and resources to families of children and youth with special health care needs (CYSHCN) and the professionals who work with them through individual information and referrals, parent matching, conferences and sharing of materials including care notebooks and resource guides. Continuing to work with families to promote leadership and advocacy has increased state membership and helped to introduce Family Voices to more families. FV of NY partners with Title V on the NY Title V Needs Assessment and Block Grant. Family Voices of New York has also provided education and training for pediatric residents, nurses and dentists.
GeneTests - a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.
Genetics Alliance - This is an organization devoted to promoting optimum health care for people suffering from genetic disorders.
Health Advocacy Bulletin (a special issue on health advocacy and human genetics, featuring "Responding to a Genetic Disorder: A Case Becomes a Cause," by Katherine R. McCurdy, founding Board Member of the Barth Syndrome Foundation, Inc.)