Mission: Our mission is to save the lives of children and adults suffering from 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.
Results: Recipent of 2010 Child Neurology Foundation Advocacy Award of Merit, recognizing outstanding achievements on behalf of children with developmental and neurological disabilities.
Target demographics: Save the lives of children and adults affected by urea cycle disorders
Direct beneficiaries per year: over 700 patients, their families and medical professionals
Professional with expertise in this field
I first heard about NUCDF 12 years ago when my son was diagnosed with a different rare disorder that also has hyperammonemia. The executive director was very helpful in explaining hyperammonemia to me and sending us in the right direction. A couple years later, I started a non-profit with other families for my son's disorder. NUCDF has mentored our organization and partnered with us on a number of projects. I am thankful for their advice, support, partnership and friendship. I am a more informed parent as well as a better leader because of NUCDF and would recommend them for 2012 Top-Rated Awards.