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2024 Family Conference

Conference Information


Join us for the 24th Annual NUCDF Family Conference at the Westin at the Woodlands in Houston, TX, from Friday, April 5, through Sunday, April 7, 2024.  

The 2024 NUCDF family conference, "Legacy of Hope," aims to improve the lives of children and adults with UCDs. It offers an exclusive opportunity to learn about advances in research, new treatments, and cutting-edge health management insights. But most importantly, this is your opportunity to meet families, create new connections, and rekindle previous relationships. Whether this is your first conference or your 24th, join us as we celebrate our community.  

This year’s conference kicks off with a Welcome Reception that will honor our beloved Cindy LeMons, the longtime NUCDF executive director who passed away in June 2022. Brendan Lee, M.D., Ph.D., of Baylor College of Medicine, will host this distinctive event. Join us as we look back and celebrate Cindy’s impact on our community.

Conference registration is free

Saturday will begin with the General Session focused on the latest research and treatment updates from world-renowned UCD scientific and medical experts. The session will include “Ask the Expert” panel discussions, breakout sessions on UCD management, and treatment option updates, including liver transplant and gene therapy. The day will integrate many opportunities for interaction. We want to hear from UCD patients and families about the questions you have and the challenges you're facing to help shape our research agenda moving forward.

Our conference will conclude with an informal social gathering. You'll have a chance to sit by the pool, relax, mingle, and chat with the entire NUCDF community.

The 2024 conference will be held in conjunction with the annual scientific meeting of our research partner, the Urea Cycle Disorders Consortium (UCDC), which is part of the National Institutes of Health-funded Rare Diseases Clinical Research Network. Leading UCD research and care experts will be available to share their insights and interact with the community.

Hotel Information

Visit our Hotel Information page to learn more about the Westin at the Woodlands in Houston, Texas. A discounted room rate is available for family conference attendees until 5 pm Central time on Monday, March 14, 2024. Reserve your room today. 

Travel grants available

Thanks to a generous donation, NUCDF will offer grants to cover travel expenses for our families to attend the 2024 NUCDF Family Conference. After you have completed conference registration, visit the Travel Grant page for more details.  


Comments from our UCD community:

"NUCDF really is the driving force behind UCD research and support and education of families and physicians alike. NUCDF has directly improved the lives of families by providing them with credible guidance and access to the most current information." —Brendan Lee, M.D., Ph.D., Chair, Division of Molecular and Human Genetics, Baylor College of Medicine

"NUCDF provides services and support to patients and families with UCD that no other organization, no matter how well funded, can. NUCDF is an essential component in the care of patients and has come to be relied upon by both affected families and the professionals caring for them." —Stephen Cederbaum, M.D., Emeritus, UCLA Department of Medical Genetics

"It's always amazing. We go to the conference every year we can, and we always leave with more information that helps us care for our son. Because of the research we learn about at the conference, we have hope for his future." —BR

"We left exhausted but hopeful and excited to put what we've learned to use right away. We plan to stay in touch with the other families we met and see them again at next year's conference. Thanks to NUCDF for being there for all of us!" —ED

"NUCDF gave us more information than we ever got from our doctor. We were confused by all the crazy stuff we read on the internet and Facebook and suspected the sources were pretty scary. NUCDF helped us sort out the facts so we could actually help our daughter. —NS

 

From Facebook:

I'm so happy we finally met in person! We learned a great deal, and the conference helps combat the feelings of isolation and fear that come with a UCD. Everyone we met was so welcoming, compassionate and genuine.

The NUCDF conference we attended in Cleveland was just awesome. These doctors are the best in the world when it comes to urea cycle disorders and I feel so thankful to have heard what they have to say. We have a lot to think about after this trip in terms of how we want our son's future to be. It was so nice meeting families and especially others moms who understand what it's like to have a child with this disorder and the stress that it brings. They were so comforting when I was an emotional wreck. I feel like they have been my friends for a long time already :-)  A big thank you for putting this together and taking the time to talk to me about my son, and for being such an advocate for our kids!!!!! We are beyond blessed to have this help.

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