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National Urea Cycle Disorders Foundation leads the way in the fight against urea cycle disorders
Urea Cycle Disorder Families stand as a united voice for urea cycle disorder research

Urea cycle disorder UCD support and information

NUCDF is a key partner in the Urea Cycle Disorders Research Consortium
NUCDF is a member of NIH Rare Diseases Clinical Research Network, Guidestar, NORD Organization for Rare Diseases


We know Urea Cycle Disorders.  We live to conquer them. 

GET HELP AND SUPPORT:   Do you need support? Whether you have just received a diagnosis of urea cycle disorder, or you're a UCD veteran, we can help with information on diagnosis, learning how to manage a urea cycle disorder, living with UCD, and everything in between. Tell us your story. We're here to help with credible information and individual support.

CONNECTING FAMILIES WITH UREA CYCLE DISORDERS: Network with other UCD patients and families one-to-one or in our vibrant private online community. Email or call us at (626)578-0833 (Pacific Standard Time)
GET INFORMATION: Learn more about UCD, or get help for a specific issue. We're here to answer your questions. Recognize the signs of urea cycle disorder.

GET INVOLVED: Join the fight to conquer UCD. Learn more about supporting or participating in UCD research.

STAY INFORMED: Keep up with the latest information on urea cycle disorder treatments, management and research.

Sign up for urea cycle disorder newsletter

News and Announcements

April 10, 2019 COMMENTARY - HEALTHCARE OF TOMORROW US NEWS AND WORLD REPORT: "In the race to improve healthcare in America, we need to maintain checks and balances as we consider new treatments."

March 2, 2019 LINCOLN FIFTH-GRADER BATTLING RARE DISORDER: Mya shares her story to raise awareness about OTC deficiency. Thank you to the Blomenberg Family for all their support of NUCDF since Mya's diagnosis, and for participating in UCD research studies to move the ball forward!

February 28, 2019 NUCDF RARE DISEASE DAY VIDEO: Commemorating Rare Disease Day around the world, focusing on raising awareness of the challenges faced by UCD patients and families.

February 28, 2019 Meet Kristy: Affected by UCD, Kristy "shows her Rare," and shares her story for Rare Disease Day 2019. Thank you, Kristy!

March 4, 2019 UCD? MEET YOUR NEW BEST FRIEND - NUCDF ANNOUNCES MYUCD DIET®: Medical professionals stopping by our exhibit at the Society for Inborn Errors of Metabolism (SIMD) meeting got a sneak peak at our new UCD diet management mobile app debuting this summer, designed specifically for UCD patients and families. Three years in development with input from UCD experts, families and patients, the project also includes a portal for dietitians to help manage and monitor diet changes, and a research portal to facilitate new studies on nutritional issues in UCD. Meet MyUCD Diet® at the NUCDF Family Conference! Sign up for MyUCD Diet® alerts and launch date.

February 28, 2018 NUCDF RARE DISEASE DAY VIDEO: Honoring UCD families and their contributions to research, and raising awareness to over 4,900 on our NUCDF Facebook Page.

February 28, 2018 JACKSON FUKUDA WINS RARE ARTIST AWARD: Affected with the rare UCD, arginase deficiency, Jackson used his artistic talent to raise awareness of UCD. Jackson's artwork was displayed at the Rare Artist Reception in Washington DC as part of Rare Disease Day on Capitol Hill. We're so proud of you, Jackson!

 

November 27, 2017 AND THE NEED FOR BLOOD AMMONIA TESTING IN THE EMERGENCY DEPARTMENT: Swift identification of elevated ammonia levels in the ER is needed to save lives. Zoey was a beautiful, spirited 19-year-old college student who lost her life to undiagnosed OTC deficiency. In Zoey's memory, her family has partnered with NUCDF to help raise awareness and educate medical professionals on the need to obtain blood ammonia levels.  "...Every medical student Every intern Every physician Every physician assistant Every nurse Every healthcare provider Every resident assistant Every coach Every one should see this video," says Lorraine Potocki, MD, FACMG, Professor, Department of Molecular and Human Genetics, Baylor College of Medicine.

August 18, 2017 CNN.com WOMAN SUFFERS FATAL HYPERAMMONEMIA FROM UNDIAGNOSED OTC DEFICIENCY AFTER INGESTING HIGH-PROTEIN FOODS AND PROTEIN SUPPLEMENTS FOR BODYBUILDINGSymptoms of urea cycle disorder went unrecognized as young mother, Meegan Hefford, prepared for a bodybuilding competition. Undiagnosed urea cycle disorders can be triggered by high-protein diets, resulting in excessive ammonia levels in the bloodstream. Her death triggers a world-wide controversy over the risks of high-protein supplements.

April 27, 2017 NEW YORK TIMES YOUNG COLLEGE STUDENT DIES FROM UNDIAGNOSED OTC DEFICIENCY:  Despite reporting stomach pains and vomiting to emergency room personnel, a young woman dies from hyperammonemia due to undiagnosed OTC deficiency. A simple test in the ER - an ammonia level - could have saved her life. 

July 25, 2017 CLINICAL TRIAL FOR ASA/ASL TREATMENT OPEN FOR ENROLLMENT: The long-awaited clinical trial "Effect of Nitric Oxide Supplementation on Neurocognitive Functions in Patients With Argininosuccinate Lyase Deficiency/Argininosuccinic Aciduria (ASLD/ASA)" is now open for enrollment at Baylor College of Medicine (one of the UCD Research Consortium clinical research sites) in Houston, Texas. A result of their pioneering discovery on the role of the urea cycle in regulating nitric oxide in the human body, the study is being conducted by Dr. Sandesh Nagamani and Dr. Brendan Lee to assess the effects of nitric oxide supplementation on general cognition, memory, executive functioning, and fine motor functioning in individuals with ASLD. DETAILS AND ELIGIBILITY

January 28, 2017 ARGINASE DEFICIENCY CLINICAL TRIAL: Pharmaceutical industry sponsored clinical trial recruiting participants to test safety and effectiveness of enzyme replacement therapy for Arginase Deficiency. Clinical trial and eligibility information here. What is a Phase I/II clinical trial here.

September 2016 NUCDF FUNDS TWO NEW UCD CLINICAL RESEARCH SITES at Stanford/Lucile Packard Children's and University of California San Francisco. Both sites will be part of our National Institutes of Health (NIH) Rare Diseases Clinical Research Network Urea Cycle Disorders Consortium (UCDC). The UCDC is an international research network with 14 academic centers in the US, Canada and Europe providing state-of-the-art care and conducting cutting-edge UCD research. The UCDC is a collaborative partnership between the NIH, UCD clinicians, researchers and the National Urea Cycle Disorders Foundation to improve knowledge of UCDs, speed development of new treatments and clinical trials, and train the next generation of researchers.

More News and Announcements Archive

Do you need help or information on understanding or managing UCD? We're here to help you! Email us at

Support the Fight to Conquer Urea Cycle Disorders

"IN TRIBUTE TO HER SON, CROY, OTC deficiency MOM DEBI WEST INSPIRES HER ART STUDENTS TO SUPPORT OUR CAUSE"

Help Move Research Forward - Participate in a Research Study

NUCDF President Tresa Warner (family with OTC deficiency) talks about her family's participation in the Longitudinal Study of Urea Cycle Disorders, and thanks the National Institutes of Health for its support of the Urea Cycle Disorders Consortium

We can make a difference and help end the devastating effects of urea cycle disorders.

Please support NUCDF and participate in UCD research!

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Participate in a UCD Research Study


Education and Awareness Videos

UCD Awareness - Rare Disease Day

Connecting families, educating providers and first responders, research meetings, new treatments in the pipeline, new studies, providing life-saving information and support to newly diagnosed families and adults, and to our UCD veterans.

Overview of Urea Cycle Disorders

NUCDF Conference Presentation Series

Baby Steps - Learn the Signs, Act Early

Put Your Hands Together: Learn how to help stop the spread of colds and flu and stay healthy.

Plate Full of Color: Teaches kids the value of eating a variety of colorful and healthy foods.

 

 

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Save the Date!

9th Annual Cure the Cycle Challenge

August 18, 2019

You can Raise UCD awareness and support the fight to conquer UCD. Be a Challenge Rider or join us in spirit as a Virtual Rider without leaving home!

Hope Happens Here

July 19-21, 2019
Washington DC

NUCDF Annual Family Conference

Connecting UCD families and UCD medical experts, updates on UCD research, treatment, management, diet, resources and more!

8th Annual
Cure the Cycle Challenge

August 19, 2018

Thank you to all our riders and supporters for making our 8th Annual Challenge a success! We Ride because lives depend on it!

Seas the Day

NUCDF Annual Family Conference

Mission Bay, San Diego, CA

July 6-8, 2018

Highlights

"OUR DREAM IS FOR A CURE" Shopping Totes

NUCDF Cure Urea Cycle Disorders Support

SAVING LIVES Awareness Bracelets NOW AVAILABLE
Urea Cycle Disorder Awareness Bracelet

¡Folletos del conocimiento de UCD en español!

Help Move  Research Forward by participating in critical research studies.

Comparative Effectiveness Study - Liver Transplant vs. Standard Treatment: Through the participation of UCD families who have had liver transplant or are continuing with standard UCD treatment, researchers seek to understand differences in risk, survival, neurocognitive oucome, and short and long-term quality of life.

UCD International Patient-Reported Outcome Study: Report your own unique experiences as a parent or individual affected by UCD. Help increase the understanding of UCD, how many people have the disorder, and how diagnosis, treatment and outcomes can be improved. You can help identify under-recognized issues and areas that need more research. Details

Neuroimaging Studies:

   1) Studies using MRI techniques are being conducted to investigate the effects of UCD on brain function.  Details HERE.  For more information or how to participate contact NUCDF.

   2) Study of past MRIs: If your child (or an affected adult) has had an MRI or EEG in the past, sign a consent to release the data to Dr. Andrea Gropman at Children's National Medical Center for reinterpretation by new software in a special study of effects of UCD on brain function. For more information contact NUCDF or Study Coordinator Details HERE

 

 

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