Health/Physical Illness: Genetic Disorders/Syndromes – Page 5

Silver Russell Syndrome Global Alliance

Network and exchange of information for parents of children with Russell-Silver Syndrome. Information and referrals, phone support, pen pals, conferences, literature, and newsletter.

American Porphyria Foundation

Supports research, education, and information for the public, patients, and physicians. Networks porphyria patients and support groups. Quarterly newsletter, pen pal program, and telephone network.

Cure SMA (Spinal Muscular Atrophy)

For families affected by spinal muscular atrophy including Werdnig-Hoffman, Kugelberg-Welander disease, and Aran-Duchenne Type. Educational resources, phone support, and media resources.

Graves’ Disease & Thyroid Foundation

To fund research, improve treatment, and increase public awareness. Free online informational publications, online community forum, educational events, a network of volunteer-led community support groups, toll-free hotline for information and support, e-newsletter and print newsletter featuring current news and information. (Print newsletter delivered twice per year to members).

The Mast Cell Disease Society

Dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Disorders as well as their families, caregivers, and physicians through research, education, and advocacy.

National Tay-Sachs and Allied Diseases Association

Devoted to the detection, prevention, and cure of Tay-Sachs and other fatal degenerative disorders through programs of research, education, and support services. Parent peer network and repository of specialized knowledge.

Shwachman-Diamond Syndrome Support

Mutual support and information for families affected by Schwachman syndrome, characterized by pancreatic insufficiency, retarded bone growth, and hematological abnormalities. Advocates for research.

InterConnect

Information and support for women and families with AIS-DSD. Information, referrals, phone support, support group meetings, literature, advocacy, conferences, and newsletter.

Cystic Fibrosis Foundation

Information, brochures, pharmaceutical services, and updates on research. To assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.

Iron Disorders Institute

Resources. For hemochromatosis families and interested professionals. Promotes awareness, encourages screenings to identify families, fund raising, videos, educational materials, genetic counseling, referrals, newsletter, conferences, and teleconferences.