Join us on Saturday, July 26, 2025 for our Virtual Family Conference. You'll find a blend of expert talks and opportunities to connect with one another on key topics relevant to the UCD community. We are pleased to feature insights from our UCD expert panel on the topics you highlighted as important:

• Updates on UCD treatment options (medical management, transplant, emerging therapies) 
• Transition to adulthood 
• UCDs and school – 504s, IEPs, vocational rehab
• Improving neurocognitive outcomes 
• Optimizing diet management, including an update on MyRareDiet
• Family planning for carriers and affected patients
• Industry updates: Generic glycerol phenylbutyrate and clinical trials

NUCDF Wins Grant to Build Network, Create Roadmap for Future Research in Urea Cycle Disorders

NUCDF is launching a two-year national project to establish the multistakeholder NUCDF Partner Network, survey patient needs, and develop a roadmap for future research in these rare disorders. The project is funded through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI)

Puberty Survey

We are doing some research on UCDs and puberty and we need your help. Please click the button below to take a brief survey. 

Back To School Resources Available

It's hard to believe we're thinking back to school already, but it is nearly that time for many kids across the country.

In preparation, we want to share our back to school resources with you to help with the transition.

Click below to find our teacher's guide, medical management guide, and more.

Cure the Cycle

Mark your calendars for our
2025 Cure the Cycle event on

October 4, 2025.

Join families from around the world in a powerful mission to move together and raise funds for UCD Fellowship Grants, making a meaningful impact for a brighter future. Together we can cure the cycle.

UCD ECHO

We are delighted to share that our second UCD ECHO event was a great success. We appreciate the contributions of all those involved. Find recordings HERE.

Registration is now open for Session 3: The Importance of Diet, scheduled for Tuesday, September 16. 

UCD Symposium

The 6th International Symposium on Urea Cycle Disorders (UCD) will be held in Kyoto, Japan, from September 1 to 2. The event will bring together a distinguished group of internationally recognized clinicians and scientists who are at the forefront of research and clinical care in the field of urea cycle disorders. NUCDF is proud to co-organize this event.