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.

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. They connect a network of family organizations across the United States that provide support to families of CYSHCN. They promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children. Family Voices
- Find your state’s Family Voices Organization here: Affiliate Archive – Family Voices
- Family Voices National has an extensive catalog of webinars, documents, articles and videos on its website: https://familyvoices.org/resources/

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
- Find your state’s Parent to Parent Organization here: For Parents (p2pusa.org)

Center for Parent Information and Resources | Your Central Hub for Parent Centers Serving Families of Children With Disabilities (parentcenterhub.org) The Center for Parent Information and Resources is a central hub with information about Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs). PTIs, funded through the federal Individuals with Disabilities Education Act (IDEA) help families understand special education services for CYSHCN to age 22. CPRCs help families who need additional language supports

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. Home – NORD (National Organization for Rare Disorders) (rarediseases.org)
- Find organizations related to specific genetic conditions here: Find a Patient Organization – NORD (National Organization for Rare Disorders) (rarediseases.org)

Advocacy and Support Resources

Find A Genetics Clinic