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National Urea Cycle Disorders Foundation

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Nonprofit Overview

Causes: Health, Health Care, Medical Research, Specifically Named Diseases

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 life-saving information on treatment and management to both medical professionals and affected families. Awareness: Raising awareness so that no child or adult suffers or perishes from lack of diagnosis and treatment. Community: Connecting families with urea cycle disorders and 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. Founding Partner of the NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium supporting research and centers of excellence for clinical treatment of children and adults with UCD. Founder of the CureUCD Center for Preclinical Therapeutic Discovery to catalyze development of a cure and help drive new treatments for UCD through the research pipeline.

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

Geographic areas served: International

Programs: research, education, support

Community Stories

6 Stories from Volunteers, Donors & Supporters


General Member of the Public

Rating: 5

While I am not an individual with OTC my wife has had this disorder since she was born. As I am sure you can imagine I knew little of the disorder. I sought out information so I could be conscious about what to expect and what do in case of crisis. The information that the NUCDF provided me was invaluable. I can’t say enough how the NUCDF and its members/families have been so supportive throughout the years. This is a great resource for families!

General Member of the Public

Rating: 5

I'm one of the oldest individuals with a UCD that was diagnosed within the first few years of my life. For most of my life, I didn't know others like me. Then in my 20s, my health took a turn for the worse. My family reached out to the NUCDF and they were there with education and support. Eventually my health improved and today I am living a happy and full life. I've had the opportunity to attend some of the family conferences and chat online with others like me. It has been a blessing to know I'm not alone. This organization is more than a community of people, it's a family. They work with doctors, patients, and lawmakers to advocate for patients. They have helped contribute to medical advances for patients and funds to help those in need.


General Member of the Public

Rating: 5

My son Finn was diagnosed with neonatal onset ASA when he was 5 days old. Months later I found the NUCDF through a Facebook Support group. The NUCDF has provided me and family so much knowledge and support. I wish I had found them earlier!

This foundation is so amazing. They held the national conference in Ohio and we attended. This conference literally changed our lives. We learned so much from the doctors, NUCDF staff as well as other parents. Because of this conference it led us to make some huge decisions for our son.

Cynthia LeMons, Is an amazing woman. She has spent hours with me discussing my son and his needs. Talking on the phone with me multiple times and listening to my concerns. She is very knowledgable and so helpful. I am so thankful to have her support then and even now.

I owe so much to Cynthia and the NUCDF. :-)

General Member of the Public

Rating: 5

Hello my name is Christine and I was diagnosed with OTC at the age of 3 1/2 when I ended up in a coma on my mother and now 33 years later I find an organization and people who are just like me and to know that there is someone who understands what we as UCD patients are going through is great. I have been to 2 conferences in the past and learned about a medication that I have been taking almost 4 years now called Ravicti and I am so grateful to all the information I have received. I am a member and will continue to be one and help find a cure for this disease

General Member of the Public

Rating: 5

The NUCDF has been extremely helpful to our family. We are so lucky to have them as a great resource. I don't know what the families would do with out them. They are there for any questions or concerns you may have and they keep us up to date on the lastest advances being made in the urea cycle disorders. Their conference is family oriented and very informative. Having a child with a rare disease I feel blessed knowing we have the NUCDF.

General Member of the Public

Rating: 5

This foundation has impacted the lives of my daughters and so many children in this world. It has given us so much information and hope throughout the years. The foundation is a gift for GOD for the families who suffer from these horrifice disorders. They helped save our daughters lives.