• Genetic Alliance: Founded in 1986 as the Alliance for Genetic Support Groups, Genetic Alliance has become the world’s leading nonprofit health advocacy organization committed to transforming health through genetics. Their open network connects members of parent and family groups, community organizations, disease-specific advocacy organizations, professional societies, educational institutions, corporations, and government agencies to create novel partnerships.
  • Referral to support and partnering with Family-led Organizations: A Reference Guide
  • National Genetics Education and Support Center (The Family Center):The Family Center works to increase access to genetic services by promoting and strengthening family engagement in the genetic healthcare delivery system. Families are at the center of what they do. They partner with them, so that family experiences are reflected in their work. Committed to supporting them as they navigate the genetics healthcare delivery system, The Family Center ensures that families are getting actionable, digestible information to feel empowered in their healthcare decisions.

New York-Mid Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC) (familyvoices.org)

  • Parent to Parent USA (P2P USA) is a national nonprofit organization that promotes excellence in P2P programs across the nation. Since the 1970s, Parent to Parent programs have been providing emotional and informational support to families. We know there is strength and power in connecting parents of children with disabilities or special health care needs, for a wide range of conversations that will be helpful throughout their parenting experiences. https://www.p2pusa.org
  • EveryLife Foundation Is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.  They provide the training, education, resources and opportunities to make the patient advocate’s voice heard.
  • Disease Info Search is a quick reference for many different genetic disorders, and includes information about clinical trials, support groups, news and events, and relevant publications. https://diseaseinfosearch.org/
  • The Rare Diseases Registry Program (RaDaR) is an informational website created to provide guidance to patient communities about creating disease registries that they may use to communicate with researchers. While it provides information about registry platforms and selecting the platform that aligns best with the goals of the given group, RaDaR itself does not store patient information. https://registries.ncats.nih.gov/about-radar/
  • NCC Resource Repository (ReRe) is a public access database containing resources for patients, genetics providers and other healthcare providers, public health workers, educators, policymakers, and insurers. The resources were created by the National Coordinating Center, the Regional Genetics Networks, the National Genetics Education and Family Support Center, and other partners. It is searchable by topic, intended audience, and by keyword search. https://nccrcg.org/resources/

Contact Us

NYMAC Administrative Office

124 Front Street
Binghamton, NY 13905

Email: NYMAC@ferre.org

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