We had an empowering, life-changing weekend! The NUCDF Family Conference connected UCD patients, families, researchers and medical professionals to improve outcomes and accelerate research.
Each year, the NUCDF Annual Family Conference is a unique opportunity to learn about advances in research, new treatments, and cutting-edge management insights that can help improve the lives of children and adults with UCD. Families and medical professionals are partners in our research roadmap to improve the future for all those affected by UCDs. UCD patients and families are empowered with tips and tricks that make a difference in dealing with UCD.
Our 2019 Family Conference was held in conjunction with the annual scientific meeting of our National Institutes of Health Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). Over three days, the Family Conference activities included the General Session with the latest research and treatment updates from preeminent UCD scientific and medical experts, focus groups, "Ask the Expert" panel discussions, workshops and breakout sessions on UCD treatment and management, and liver transplant for UCD.
The program included updates from research studies conducted by our NIH Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). Now in it's 15th year, the UCD Research Consortium is an international network of research and clinical "centers of excellence" that conducts pioneering research to improve the knowledge of UCDs, clinical trials for new treatments, and ongoing natural history studies of UCD patients. NUCDF is a founding partner in the UCDC in developing clinical trials for new treatments and research studies to advance the understanding of UCD.
UCD patients and families had the the opportunity to participate in an important research study right at the conference using a non-invasive neuroimaging technique to test new neurocognitive evaluation tools that will be used in upcoming studies.
Conference Workshops, General Session & Breakouts Topics included:
- Optimizing management and drug treatment options
- New research comparing liver transplant to standard management
- Updates on how UCD affects learning, mood and behavior
- New and upcoming clinical trials
- Predicting risk of liver disease in UCD
- Improving long-term health and outcomes - new treatment and management insights.
- Presentations by UCD patients including life strategies for living with UCD, and life after transplant
- Patient-Powered Research updates
- Managing the UCD diet - participants learned what can be be sabotaging metabolic stability, mood & behavior, brain function and well-being
- New frontiers - mRNA gene correction, the microbiome, metabolomics and the gut-brain connection
- CureUCD Center for Preclinical Therapeutic Discovery - accelerating promising breakthroughs
STAY INFORMED with credible information!
If you aren't able to attend the conference, you'll want to stay up to date on the latest developments in our UCD world. If you are not already a member of NUCDF, please accept this personal invitation to join us, stay informed and be part of our international UCD community! Membership is free, but the benefits are priceless. Together, we WILL find a way to end the devastating effects of UCD!
2018 NUCDF Annual Family Conference Highlights
July 6-8, 2018
Hilton San Diego Resort & Spa
San Diego, CA 92019