Fragile X Research Foundation
Information and support on Fragile X Syndrome. Funds medical research into the treatment of this disorder. Newsletter and literature. Some chapters have support group meetings.
Read moreHealth/Physical Illness: Genetic Disorders/Syndromes
March of Dimes – Healthy Moms Strong Babies
Referrals to national parent support groups for birth defects and local March of Dimes Chapters. Education and information available on prevention of birth defects, pre-pregnancy, genetics, medication, and other related topics.
Read moreNational Spasmodic Torticollis Association (NSTA)
NSTA aims to support the needs and well being of affected individuals and families, promote awareness and education, and advance research. Information on available treatment options, resources, and support for individuals and families.
Support for individuals with ST and their families. Promotes research, public education, and establishment of spasmodic torticollis support groups
Read moreSilver 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.
Read moreAmerican 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.
Read moreCure 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.
Read moreGraves’ 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).
Read moreThe 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.
Read moreNational 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.
Read moreShwachman-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.
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