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The Children's Research Institute

Rare Diseases Clinical Research Center RDCRC Urea Cycle Disorders Consortium UCDC

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Urea Cycle Disorders Consortium A group of healthcare professionals and researchers dedicated to improving the lives of patients with urea cycle disorders

Genetics & Metabolism Department at Children's National

National Organization for Rare Disorders (NORD) Nonprofit group of voluntary health organizations serving people with rare disorders and disabilities. Dedicated to the identification, treatment, and cure of rare disorders through education, advocacy, research, and service

National Urea Cycle Disorders Foundation Provides information and support for families. Supports and stimulates medical research and increased awareness by the public and the legislators of issues related to urea cycle disorders.

The Rare Diseases Clinical Research Center (RDCRC) on Urea Cycle Disorders (UCDC), originally funded by the National Institutes of Health in 2003, consists of 15 U.S. and two international sites and involves more than 50 investigators and staff. The Consortium's focus is urea cycle disorders (UCD), a group of rare but devastating inborn errors of metabolism that carry a high mortality and morbidity in childhood. The core study is a longitudinal natural history study that investigates morbidity, mortality, and biomarkers in over 500 children and adults with UCD in sites across the U.S., Canada, and Europe to; performing Phase II trials of novel drugs to improve ureageneis in affected patients, and assessing neural mechanisms of injury using innovative neuroimaging and neuropsychological testing procedures. 

Faculty members of the Urea Cycle Consortium: