Topic Contents

Metabolic Disorders

Self Help Clearinghouse

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.

CLIMB - National Info. and Advice Centre for Metabolic Disease

International network. Founded 1981. Provides support and information for individuals and their families dealing with over 700 metabolic conditions. Newsletter, phone support, pen pals, annual conference and written information in English, Welsh, Urdu and Punjabi. Small administration fee required for postage.

Write:

Climb Building

176 Nantwich Rd.

Crewe, United Kingdom CW2 6BG

Voice: 0044 845 241 2173 (day)

Website: http://www.climb.org.uk

E-mail: pam@climb.org.uk

Verified: 3/27/2012

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

c/o Tahma Metz

5424 Beech Ave.

Bethesda, MD 20814

Voice: Tahma Metz 301-530-0354

Fax: 301-564-9597

Website: http://www.purineresearchsociety.org

E-mail: purineresearchsociety@verizon.net

Verified: 8/22/2011

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

c/o Cynthia Wren-Gray, President

P.O. Box 860847

Plano, TX 75074

Voice: 1-800-250-5273

Fax: 903-640-8254

Website: http://www.cdgs.com

E-mail: cdgaware@aol.com

Verified: 4/3/2012

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

Copyright © 2012 American Self-Help Group Clearinghouse. All rights reserved.

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