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.
Urea Cycle Disorder Discussion Board
Online. Opportunity for parents caring for a child with a urea cycle
disorder to discuss concerns and ideas. Goal is to increase
awareness of urea cycle disorders in order to improve diagnosis.
Website: http://www.disc.yourwebapps.com/indices/157587.html
Verified: 10/9/2008
National Urea Cycle Disorders Foundation
National network. Founded 1989. Links families, friends and
professionals who are dedicated to the identification, treatment and
cure of urea cycle disorders, genetic disorders causing an enzyme
deficiency in the urea cycle. Networks families together for
support, educates professionals, public and supports research. Phone
support, literature and newsletter. Dues $35.
Write: Nat'l Urea Cycle Disorders Fdn.
75 South Grand Ave. Pasadena, CA 91105
Voice: 1-800-386-8233 Fax: 626-578-0823
Website: http://www.nucdf.org
E-mail: info@nucdf.org
Verified: 9/26/2008
ASA Kids
Online. Opportunity for parents of children with argininosuccinic
aciduria to come together for support and information. Discussion
board, stories on affected children and links.
Website: http://disc.yourwebapps.com/indices/106610.html
Verified: 10/9/2008
TRUE Kids
(Transplanted to Resolve Ure-cycle Enzyme-deficiency) Online. Mutual
support and information for families of transplanted children with
urea cycle disorder.
Website: http://disc.yourwebapps.com/indices/153415.html
Verified: 10/9/2008
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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