Resources for Patient and Families
The links and resources outlined here are provided to help patients, researchers, and health care providers gain access to information about urea cycle disorders. It is neither within the purview, nor the intention of the UCDC to endorse information contained within these links.
Living with Urea Cycle Disorders
The National Institutes of Health Genetic and Rare Disease Information Center offers a wealth of information regarding urea cycle disorders, including accepted forms of treatment, research materials, financial and educational resources, and more.
The National Urea Cycle Disorders Foundation is the only nonprofit organization in the world solely dedicated to saving and improving the lives of children and adults from the catastrophic effects of urea cycle disorders. Formed in 1988 by a handful of parents whose children were affected, NUCDF has grown to be an internationally recognized leader in the fight to conquer UCD and raise awareness that saves lives. NUCDF is the driving force behind critical research to improve the understanding and management of UCD, find new treatments, and ultimately a cure. NUCDF serves as a lifeline to UCD patients, families, and medical professionals worldwide seeking information, support, and HOPE.
Urea Cycle Disorders -A Guide for Patients, Parents and Families
An easy to understand information resource from the European registry and network for Intoxication type Metabolic Diseases (EIMD).
Urea Cycle Disorders and Organic Acidurias for Younger People
An easy to understand information resource from the European registry and network for Intoxication type Metabolic Diseases (EIMD).
Living with UCD in a COVID-19 World
In partnership with the National Urea Cycle Disorders Foundation (NUCDF) and the Rare Diseases Clinical Network, the Urea Cycle Disorders Consortium asks UCD experts, panelists Andrea L. Gropman, MD, and Sandesh Magamani, MD, to discuss living with UCD amidst the COVID-19 pandemic. NUCDF Executive Director Cynthia Le Mons moderates.
COVID-19 Vaccines and UCD
In partnership with the National Urea Cycle Disorders Foundation (NUCDF) and the Rare Diseases Clinical Network, the Urea Cycle Disorders Consortium assembled expert panelists to discuss the impact of the COVID-19 vaccine on patients with UCD.