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Advocacy Group Information

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Join the Contact Registry and Receive the most current information on:

  • + open recruitment for clinical studies of your disease
  • + opening of new clinical sites doing research on rare diseases
  • + activities from affiliated awareness and advocacy groups
  • + information on future opportunities to participate in research!

Welcome to the Urea Cycle Disorders Consortium!

The UCDC exists to bring together physicians and patients for the sake of Urea Cycle Disorders research.

We Need Your Help

The future of urea cycle disorders research begins here. Every active role a patient takes may possibly play a part in discovering new groundbreaking research and finding new treatments.

Research cannot move forward with out your help.

 

UCDC Events | UCDC Publications

Mark L. Batshaw, MD, Physician-in-Chief and Chief Academic Officer for Children's National, Says Drug Development for Rare Diseases in Children at a 'Tipping Point.' More clinical trials, increased patient advocacy, and collective work in a multi-disciplinary consortia of healthcare organizations, are becoming increasingly important "to move forward" rare disease research for children, says Mark L. Batshaw, MD, Physician-in-Chief and Chief Academic Officer for Children's National Health System.

 

4th International Symposium on Urea Cycle Disorders: Catalyzing New Therapeutic Approaches
Satellite Symposium to the 12th International Congress on Inborn Errors of Metabolism
September 1-2, 2013
Barcelona, Spain
Download: Symposium Perspectus [.pdf]

 

UCDC Update Newsletter - Spring 2013

ABC News Story: April 26, 2012 - ABC News featured a story on a young man with ASA and chronically high blood pressure. Dr. Brendan Lee’s (Baylor College of Medicine) ASA and nitric oxide research led to a new approach to treat his condition. http://abcnews.go.com/Health/boy-toxic-buildup-breakthrough-treatment/story?id=16213994.

Baylor College of Medicine News: November 13, 2011 - 'Moonlighting' enzyme unravels arginine paradox. http://www.bcm.edu/news/item.cfm?newsID=4725

Washington Post: November 25, 2010 – Dr. Uta Lichter-Konecki diagnoses girl with UCD. http://www.washingtonpost.com/wp-dyn/content/article/2010/11/24/AR2010112406714.html

Washington Post Featured Story: Saving a girl from her own body's poisons Read More >

Good Morning America: May 7, 2006 - Mark Batshaw, M.D., Principle Investigator for the Urea Cycle Disorders Consortium and member of the NUCDF Medical Advisory Board, was interviewed by Good Morning America for a segment that aired May 7, 2006. The segment profiled the Rare Diseases Clinical Research Centers, sponsored by the National Institutes of Health. The segment focused on our Urea Cycle Disorders Consortium as an example of this pioneering NIH project.

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