- 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. Webinars Podcast Leadership Modules
- 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
New York Mid-Atlantic Caribbean for Genetics and Newborn Screening Services (NYMAC) (familyvoices.org) - 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.
- 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.
- 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.
- Find organizations related to specific genetic conditions here: Find a Patient Organization – NORD (National Organization for Rare Disorders) (rarediseases.org)
- Global Genes and RARE-X have been working toward the goal of empowering the next generation advocate both through their individual initiatives and their strategic partnership formed in 2021. This merger creates a new milestone enabling the combined organization to provide the next generation of rare disease advocates the tools and resources needed to accelerate advocacy efforts and also support opportunities to drive research and therapy development.
- 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.