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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Urea Cycle Disorders Consortium

a/k/a: UCDC

Address

Children's National Medical Center
111 Michigan Avenue, NW
Washington, DC 20010

Phone

815-333-4014

Email Address

jseminar@cnmc.org

Chapters

15

Website

http://rarediseasesnetwork.epi.usf.edu/ucdc/index.htm

The Urea Cycle Disorders Consortium (UCDC) is a team of doctors, researchers, and patient advocates throughout the US, working together to improve the lives of individuals and families affected by urea cycle disorders through research and education. The consortium provides a way for patients to join doctors and researchers in developing new and better treatments for urea cycle disorders by participating in research studies. The greater the collaboration between doctors and patients, the more that can be learned about urea cycle disorders. This important first step is necessary in order to find new and better treatments. The goals of the UCDC are to: develop better treatments and a deeper scientific understanding of the causes of UCD; understand how UCDs can cause brain damage and develop protection against this; conduct clinical trials of promising new drugs for the treatment of UCD; work with the National Urea Cycle Disorders Foundation, the UCD patient advocacy group, to help patients who wish to be involved in research connect with doctors conducting UCD research; construct and maintain resources with significant information for clinicians, researchers, and patients; train physicians to become experts in providing care for and treating those with UCD.

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