National Urea Cycle Disorders Foundation

Rating: 4.95 stars   19 reviews

Issues: Health

Location: 75 S Grand Ave Pasadena CA 91105 USA

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
Geographic areas served: International
Programs: research, education, support
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EIN 41-1661444
626-578-0833
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Community Reviews

Rating: 5 stars  

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

If I had to make changes to this organization, I would...

Change nothing at all

Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2011

 
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Rating: 5 stars  

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.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

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.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

 
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