RESOURCES

The following links are provided as assistance to help you learn more about urea cycle disorders.

The National Urea Cycle Disorders Foundation (NUCDF) is a nonprofit organization dedicated to the identification, treatment and cure of urea cycle disorders. NUCDF was formed in 1988 by a handful of parents whose children were affected. The foundation is operated and supported by the volunteer efforts of families with children suffering from UCDs and is a nationally recognized resource of information and education for families and healthcare professionals. Membership is open to both the interested public and medical professionals. For more information on this organization, click here.

The Urea Cycle Disorders Consortium (UCDC) of the Rare Diseases Clinical Research Network, a National Institutes of Health (NIH)-funded initiative, is a group of healthcare professionals and researchers dedicated to improving the lives of patients with urea cycle disorders. The UCDC has established centers of clinical and scientific excellence across the United States to work with patients and physicians to provide information and care with the latest information and technology. The UCDC is a leader in UCD clinical research. For more information on Centers of Excellence, click here.

The NIH Office of Rare Diseases provides information on current research, patient groups, and journal publications on more than 6,000 rare diseases, including UCD. For more information, click here.

Children Living with Inherited MetaBolic Diseases (CLIMB) provides information, advice and support to families, caregivers and support groups for more than 550 metabolic diseases, including urea cycle disorders. CLIMB is based in the United Kingdom and was known formerly as the Research Trust For Metabolic Diseases in Children. For more information on this organization, click here.