Urea Cycle Disorders
Self Help Clearinghouse
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: 12/17/2007
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: 12/17/2007
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:
National Urea Cycle Disorders Foundation
4841 Hill St.
La Canada, CA 91011
Voice: 1-800-386-8233
Fax: 818-952-2184
Website: http://www.nucdf.org
E-mail: info@nucdf.org
Verified: 10/27/2007
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: 12/17/2007
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