This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.
National. Founded 1986. Supports DNA research, looking for mutations in DNA, both nuclear and mitochondrial, that might cause autistic/epileptic symptoms in patients. Purine metabolic diseases include gout, purine autism, Lesch-Nyhan syndrome, ADA deficiency and others. Offers publications and reference information including a purine-restricted diet.
Purine Research Society
c/o Tahma Metz
5424 Beech Ave.
Bethesda, MD 20814
Voice: 301-530-0354 (Tahma Metz)
International network. Founded 1981. Provides support and information for individuals and their families dealing with over 700 metabolic conditions. Newsletter, phone support,internet forums, 600 family contacts, annual conference and some written information in English, Welsh, Urdu and Punjabi. Small administration fee required for postage.
CLIMB - National Information Centre for Inherited Metabolic Disease
176 Nantwich Rd.
Crewe, UK CW2 6BG
Voice: +44 845 241 2173
International network. Founded 1996. Support for parents of children diagnosed with congenital disorders of glycosylation, an inherited metabolic disease affecting all body parts, especially the central and peripheral nervous systems. Support is attained primarily online. Group also provides bi-annual newsletter, phone support, advocacy, information and referrals. Bulletin board for families to interact with questions, comments and updates.
CDG Family Network Foundation
c/o Cynthia Wren-Gray, President
P.O. Box 860847
Plano, TX 75074
The above information was 'verified' as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
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