I have three children, all of whom live with chronic illnesses. It is truly amazing to have an organization like this, filled with individuals who possess deep knowledge about these conditions and who have also experienced them personally. Medical diagnoses can often feel overwhelming, frightening, and isolating, but this organization changes that narrative.
Amazing support for families going through the diagnosis process and for those newly diagnosed with a urea cycle disorder!
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Parents & family members can both get connected through this life-changing foundation!
Thankful our family found this group 25 years ago when our niece was only 1 yrs old. NUCDF believes in walking alongside families to educate & advocate for loved ones affected by a Urea Cycle Disorder.
The national urea cycle disorder is foundation truly exist to help families deal with the deadly your recycle genetic disorder that affects young children, many of whom would not survive out of infancy without diagnosis in part made possible the ongoing help of this organization. Most importantly, the urea cycle disorders foundation supports families and managing their child’s disability until the time when they can get a liver transplant. I cannot recommend them highly enough in terms of the number of caring doctors medical professionals and families who are wish to support those most in need to have the urea cyc most importantly, the urea cycle disorder‘s foundation supports families and managing their child’s disability until the time when they can get a liver transplant. I cannot recommend them highly enough in terms of the number of caring doctors, medical professionals and families who support those most in need correct information medical options, eating plans and ongoing research to cure urea Cycle disorders.
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It's only been a week since we had our diagnosis of CPS deficiency one of the urea cycle disorders that are rare and hard to diagnose. In that time we could help connecting with a physician who specializes in the treatment received encouragement from the national director of the organization and found a Facebook group where we could get more support. I can't say enough good things about this nonprofit except to say that they are worthy of many kudos and donations!
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!
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.
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. :-)
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
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.