National Urea Cycle Disorders Foundation to Build Network, Create Roadmap for Future Research in Urea Cycle Disorders
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The National Urea Cycle Disorders Foundation (NUCDF), the leading patient advocacy group for people affected by urea cycle disorders (UCDs), today announced the launch of a two-year national project to establish the multistakeholder NUCDF Partner Network 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)
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| Family Virtual Conference
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On July 26, 2025, Saturday's program will feature the latest research and treatment updates from UCD's scientific and medical experts. It will include "Ask the Expert" panel discussions, breakout sessions focused on UCD management, and updates on treatment options, such as liver transplant and gene therapy. The day will offer many opportunities for interaction. We want to hear from UCD patients and families about your questions and the challenges you're facing to help shape our agenda. Please fill out our survey at this link:
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NUCDF is closely monitoring the transition to generic glycerol phenylbutyrate. NUCDF is committed to helping our patient community through this transition and will be available to assist. Email info@nucdf.org if needed. For important updates, visit the Industry Update link below.
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We are delighted to share that our inaugural UCD ECHO event was a great success and well-received. We sincerely appreciate the contributions of all those involved in making this event a success.
Registration is now open for Session 2, scheduled for July 1.
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Mark your calendars for the 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.
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The 6th International Symposium on Urea Cycle Disorders (UCD) will be held in Kyoto, Japan, from September 1 to 2. Titled “Advancements in Understanding: Global Perspectives and Innovations in Urea Cycle Disorders,” this 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 once again.
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