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National Urea Cycle Disorders Foundation

Rating: 4.95 stars   19 reviews 2,280

Nonprofit Issues:

Health

Address:

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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More Info

626-578-0833
www.nucdf.org

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Reviews for National Urea Cycle Disorders Foundation

Rating: 5 stars  

Not only is the NUCDF an outstanding resource for so many of us but a wonderful support network. They've always been there to answer any of our questions or concerns, put any of our fears to rest, be our champion and advocate and so much more!!! Thank you NUCDF!!!

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Rating: 5 stars  

As one of the original members of NUCDF back more than 20 years ago, I can hardly believe the organization that it has become. From a tiny grassroots organization with a handful of families that could barely make it through the day because their children were so sick, never mind run an organization - NUCDF has become a thriving, educational, research organization of the highest caliber. The quality of care that it gives to afflicted families is bar none and I fully attribute this to its director Cindy Le Mons. Her passion and commitment is unequaled at all levels as exemplified in the hours spent helping family members get the help they need, to her intelligence, diplomacy, and executive business skills. I do not believe that any one individual knows as much as she does about this disease. This leadership has attracted the highest caliber medical professionals. The results speak for themselves. The treatment options available today, are sophisticated and successful to the point that one could say that the survival rate of a child diagnosed with this disease would have almost 100% survival rate. As a family, we know that if we are ever in trouble, any where in the world, that Cindy will answer the phone day or night and get us in touch with the medical professional or treatment we need. We know that the organization is strong and well supported financially, professionally and the interaction between families and the professionals is solid and consistent. This has resulted in new research design, discovery and growth far beyond our tiny numbers.

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Rating: 5 stars  

Nucdf is a godsend! As a mother your world stops turning and you are so scared and lost when your child is fighting for his life in nicu. And then you get a diagnosis you have never heard of, rare disease, life thretening. You try and google, but can't find much, except for old literature wich talk about braindamage, death and disabilities. Then we found nucdf, thank heavens! The support we got was amazing and heartfeelt, it was the latest reserch and a virtual hug that never stops. We still after 4 years living in this ucd world find support, love, advice, the latest research and new friends that might live far away, but are right in our hearts.
I don't even want to think about what our lifes would be without the nucdf ♡♡♡

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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  

I would like to thank NUCDF for their great help in a difficult moment for me and my girlfriend's family when we had to deal with cases of OTC disorders. Cynthia was absolutely fantastic, competent and patient to answer all the questions and provide us many useful suggestions to deal with this problem

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

My daughter was diagnosed with a UCD at 6 months old. In m country, NOBODY knew very well what this was or how to treat it. I contacted NUCDF to learn a bit more about UCD´s, and now, I cannot imagine what it would be of my daughter and me without their support. NUCDF gave us all the info we needed about my daughter´s defficiency and recommended us to doctors who are currently treating her. But the most important thing, NUCDF gave me personally: SUPPORT. Somebody who not only understands, but also informs and cares about you and your family. I would be lost without them and without their lovely Cindy :) //// Ximena Gorostiza, MexIco City, Mexico. (mother of Nicole Vinay, affected with OTC since birth)

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Role: Professional with expertise in this field
Rating: 5 stars  

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.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 4 stars  

My experience with the National Urea Cycle Disorders Foundation has been an absolute godsend! My son has been recently diagnosed with OTC and I had never heard about OTC. The dietitian at the Children's Hospital suggested this site to me and I thank God that she did! It has absolutely been the worst year of our lives! I have learned more from this site than I have from my son's specialist. I don't know where we would be without the support, teaching and kindness from Cindy and the members on this site. This site also keeps us up to date with any new medication and research on OTC. Cindy is very knowledgeable and helpful. Even though I have never met her in person, I truly appreciate and trust her. We truly feel part of the NUCDF family!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Role: General Member of the Public
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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Role: General Member of the Public
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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