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.
CDG Family Network Foundation
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.
Write: CDG Family Network Foundation
P.O. Box 860847 c/o Cynthia Wren-Gray Plano, TX 75074
Voice: 1-800-250-5273 Fax: 903-640-8254
Website: http://www.cdgs.com
E-mail: cdgaware@aol.com
Verified: 10/1/2008
CLIMB - National Information and Advice Centre for Metabolic Disease
International network. Provides support and information for
individuals and their families dealing with over 700 metabolic
conditions. Newsletter, phone support, pen pals, annual conference,
and befriender network. Small administration fee required for posts.
Write: Climb Building
176 Nantwich Rd. Crewe, CW2 6BG, UK
Voice: 0044 870 77 00 326 Fax: 0044 870 77 00 327
Website: http://www.climb.org.uk
Verified: 9/23/2008
Trimethylaminuria Support Group
Online. 759 members. Founded 2000. Mutual support via discussion
forum for those affected by the metabolic disorder trimethyaminuria
(also known as fish odor syndrome, fish malodor syndrome and stale
fish syndrome). Trimethylaminuria is an inability of the body to
break down trimethylamine, consequently trimethylamine accumulates
in the body and is then released in a person's sweat, urine and
breath, giving off a strong fishy odor.
Website: http://health.groups.yahoo.com/group/trimethylaminuria
Verified: 9/24/2008
Purine Research Society
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.
Write: Purine Research Society
5424 Beech Ave. c/o Tahma Metz Bethesda, MD 20814
Voice: 301-430-0354 Fax: 301-564-9597
Website: http://www.PurineResearchSociety.org
E-mail: purine@erols.com
Verified: 10/8/2008
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.
For additional information on self-help groups, please visit the American Self-Help Group Clearinghouse web site at http://www.mentalhelp.net/selfhelp
If you find information that is not current, please contact American Self-Help Group Clearinghouse at: admin@selfhelpgroups.org
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