Health/Physical Illness: Genetic Disorders/Syndromes

Christopher and Dana Reeve Foundation

The Reeve Foundation’s Living with Paralysis and Caring for a Family Member Living with Paralysis support groups provide an opportunity for members to connect with others who understand what they are going through and to gain support, insight and guidance. Separate groups are held for individuals living with quadriplegia, those living with paraplegia, and family

Angelman Syndrome Foundation, Inc.

Support and advocacy for persons with Angelman syndrome (a neurological disorder) their families, and interested others. Education, information, referrals, literature, newsletter, conferences, fund raising activities, and research promotion.

Dana Farber Cancer Institute

Information regarding familial cancers.

Cure HTT

Support for those interested in HHT (AKA Rendu-Osler-Weber syndrome) by exchanging information and research. Aims to protect privacy. Newsletter, conferences, pen pals, scholarships, activities, brochures, and assistance in starting support groups.

National Council on Independent Living

Advocates for the Independent Living Movement, which aims to strengthen independent living centers through technical assistance and other membership services. Newsletter, information and referrals, and conferences.

Gorlin Syndrome Alliance

Emotional support for persons with Nevoid Basal Cell Carcinoma, a very rare condition. Information, referrals, pen pals, conferences, phone support, and bimonthly newsletter.

Sotos Syndrome Support Association (SSSA)

Information and mutual support for families of children with Sotos Syndrome. Newsletter, referrals, phone support, pen pals, and annual conferences.

A-T Children’s Project

Ataxia-telangiectasia (A-T) is a genetic disease that causes loss of muscle control and balance, cancer, lung disease and immune system problems in children and young adults, shortening their lives. The nonprofit A-T Children’s Project partners with academic and industry investigators worldwide – organizing and supporting innovative research, conferences, clinical teams, data platforms and biomarkers – to

Dandy-Walker Alliance

Information and resources about Dandy-Walker Syndrome for families.

Hermansky-Pudlak Syndrome Network, Inc.

Mutual support and education for families affected by Hermansky-Pudlock Syndrome. Networks families together for support and promotes research. Newsletter and annual conference.