2018 NUCDF Annual Family Conference


July 6-8, 2018

Hilton San Diego Resort & Spa

San Diego, CA 92019

Connecting Families with Knowledge and Hope

In the last 20 years, over than 3500 families
have attended an NUCDF Conference!

Join us on beautiful Mission Bay in San Diego for an empowering, life-changing weekend! Each year, the NUCDF Family Conference connects UCD patients, families, researchers and medical professionals to improve outcomes and accelerate research.

The 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 learn about our research roadmap and what's on the horizon for UCDs. Families are empowered with tips and tricks that make a difference in dealing with UCD.

Location

Our conference hotel, Hilton San Diego Resort & Spa, is located on the sand on Mission Bay in San Diego, California. Enjoy the sun, romp in the pools, or explore the bay paradise with water toys, a 7-mile long walking and bike trail, two parks, and minutes from SeaWorld, the San Diego Zoo, and historic Old Town San Diego. The hotel is less than 10 minutes from the San Diego International Airport. Our discounted hotel rates are extended for families who have the opportunity to stay an extra day or two.

 

Hotel Reservations

We've negotiated special room rates for our families at the Hilton of $185.00 per night. The $32 Resort Fee (giving you access to all the fun) has been waived for our conference families. Reserve Early - our room block always sells out fast! To reserve a room, click the link under Hotel Reservations in the side bar.

Childcare (Preregistration required)

Kids Kamp, our conference childcare, gives our UCD kids a chance to meet and play (and make life-long friends!) while parents attend the conference sessions. Pre-registration is required (Use the online conference registration form - after registering yourself for the conference, you'll have the option to register kids in childcare). Friendly warning - Kids Kamp results in ear-to-ear smiles, and kids don't want to leave!

Agenda

Friday, July 6, our conference begins with workshops, followed by our early evening reception for all participants.

Saturday, July 7, conference activities include the general session with the latest research and treatment updates from preeminent UCD scientific and medical experts, workshops, breakout sessions, focus groups for new products, "Ask the Expert" panel discussions, and more! The agenda includes updates from our National Institutes of Health Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). Now in its 14th 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 partner in the UCDC in developing clinical trials for new treatments and research studies to advance the knowledge of UCD.

Saturday and Sunday, July 7 & 8, UCD patients and families will also have the opportunity to sign up for focus groups and to participate in research studies right at the conference, including neurocognitive testing and a new non-invasive neuroimaging technique that Dr. Andrea Gropman presented at last year's conference. For more details about participating in the studies, contact info[at]nucdf.org or call NUCDF at (626)578-0833.

Sunday morning, July 8, Family networking breakfast, focus groups and other research opportunities.

CONFERENCE PROGRAM AT A GLANCE

FRIDAY, JULY 6, 2018

Afternoon Workshops 12:30pm - 5:00pm

1) New Family Orientation: Families new to our conference or newly diagnosed (UCD veterans are invited, too!) will get an overview of the conference, the opportunity to meet a mentor family, and learn how to get the most benefit from the conference experience, including valuable context for the educational presentations and tips for interacting with other conference families and medical professionals. Families will learn about the importance of participating in the UCD International Patient-Reported Registry, and how to obtain access to NUCDF personal support, educational and informational resources.

2) Knowledge You Can't Be Without - What you really need to know about UCD: We're thrilled to have renowned UCD expert, Dr. Brendan Lee (Baylor College of Medicine) leading this workshop. As most conference veterans would say, it just doesn't get any better than that! He'll explain the rationales behind managing the disorder that can help improve stability, as well as context for understanding clinical and laboratory findings that provide clues to maintaining stability and improving day-to-day management.

3) Meet MyUCD Diet®! Your new mobile app and tools for managing the UCD diet: Debra Hook, RD, MPH, UCD metabolic dietician and guru, will introduce our new mobile app, MyUCD Diet®. Three years in development, MyUCD Diet® is specially designed by UCD experts with input from UCD patients and families to answer the need for an easy-to-use, innovative tool to simplify managing the UCD diet. This interactive workshop is for patients and families wanting a new approach to UCD diet management and to increase their knowledge of practical strategies using real-life examples and the new tools.

Welcome Reception 6:30pm

All Families, Kids and Medical Professionals are invited and have the opportunity to connect, network, sample low-protein foods, and meet their favorite UCD expert! Light hors d'oeurvres and refreshments will be served.

SATURDAY, JULY 7, 2018  8:00am - 5:00pm

Conference General Session, Luncheon & Breakouts 

Topics include:

  • Optimizing management and drug treatment options
  • New research comparing liver transplant to standard management
  • New research reveals how UCD affects learning, mood and behavior
  • New and upcoming clinical trials
  • New studies on predicting risk of liver disease in UCD
  • Improving long-term health and outcomes - new treatment and management insights.
  • Life strategies for living with UCD, and Living with Transplant - presentations by UCD patients
  • Patient-Powered Research updates
  • Managing the UCD diet - learn what could 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
  • Kids Kamp, Family Networking, Breakouts, Focus Groups, Expert Panel Discussions and more!

SUNDAY, JULY 8, 2018 8:30AM - 12:00PM

Family networking continental breakfast, focus groups and other research opportunities.

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!

  Our Dream is a Cure, and we can't
rest until we find it...

HIGHLIGHTS FROM THE 2017 CONFERENCE

 


 

 

Urea Cycle Disorder Family

No matter what language you speak, Together, we can conquer UCD!

Juntos, somos una familia!
Ensemble, nous pouvons vaincre UCD

Gemeinsam können wir erobern UCD

Μαζί, μπορούμε να κατακτήσουμε UCD

Insieme, possiamo conquistare UCD

Вместе мы можем победить UCD

Tillsammans kan vi erövra UCD

Saman getum við sigra UCD

UCD معا، يمكننا قهر

一緒に、我々はUCDを征服することができます

با هم، ما می توانیم UCD تسخیر


Conference Registration

Online Registration

Industry, Sponsor and Exhibitor Registration

Hotel Reservations

Discounted Rate for Families

Sponsor & Exhibitor Reservations

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, MD PhD, Chair, Div. 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, MD, Emeritus, UCLA Dept. 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.

 

 

2013 NUCDF Conference 2014 NUCDF Conference 2015 NUCDF Conference Cycle Challenge Rare and Precious NUCDF Hoops for Hope Other