Urea Cycle Disorders

Self Help Clearinghouse

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 which are genetic disorders causing an enzyme deficiency in the urea cycle. Supports research, educates medical professionals, affected patients and families and the public. Provides information, referrals and networks families together for support. Phone and online support, literature and newsletter. Suggested membership contribution $35.
Write:
National Urea Cycle Disorders Foundation
75 South Grand Ave.
Pasadena, CA 91105
Voice: 626-578-0833 or 1-800-386-8233
Fax: 626-578-0823
Website: http://www.nucdf.org
E-mail: cindy@nucdf.org
Verified: 9/14/2010

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://disc.yourwebapps.com/indices/157587.html
Verified: 9/28/2010

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: 9/28/2010

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://www.true-kids.org
Verified: 9/28/2010