NATIONAL UREA CYCLE DISORDERS FOUNDATION
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Description: Leading the fight to conquer Urea Cycle Disorders.
Someone who had 3 hours of volunteer time could: contact us to share their time and talents.
Geographic areas served: International
Mission:
Our mission is to end the catastrophic effects of UCDs. We do this through REACH:
Research: Stimulating research for new treatments and a cure.
Education: Providing information on treatment and management to both medical professionals and affected families.
Awareness: Raising awareness so that no child or adult goes undiagnosed.
Community: Providing support for all those affected.
Hope: Together, we WILL conquer urea cycle disorders.
Research: Stimulating research for new treatments and a cure.
Education: Providing information on treatment and management to both medical professionals and affected families.
Awareness: Raising awareness so that no child or adult goes undiagnosed.
Community: Providing support for all those affected.
Hope: Together, we WILL conquer urea cycle disorders.
Results:
Recipent of 2010 Child Neurology Foundation Advocacy Award of Merit, recognizing outstanding achievements on behalf of children with developmental and neurological disabilities.
andersmav
06/23/11
Our son, Anders, was born a healthy baby boy on 11/2/2010. 36 hours in to his new life, he took a turn for the worst. We were rushed to two different hospitals trying to determine what was wrong with our newborn baby. We finally the confirmation that he did have a urea cycle disorder, which meant ...
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Cindy Crowe Shrum
06/05/11
This foundation has truly been a beacon of light and hope for our family. Our grandson, Anders Ericson Leon, was born in November 2010 to our daughter, Amanda, and her husband, Eric. To our overwhelming sadness....Anders lived only 18 days. The diagnosis was OTC which none of us had ever heard of...
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Robyn
06/04/11
My daughter has OTC...I suspected it when she was about 7 months of age when I started introducing solid foods to her and she was becoming failure to thrive. I have lost 2 sons to OTC so was very aware of the danger that could lie ahead of us. The thought of having to bury another child was ...
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