Resources for Patients and Caregivers
Rare doesn’t mean alone. Living with a rare disorder can be overwhelming, but it’s important to remember you are not alone. If you or a loved one has been diagnosed with a urea cycle disorder (UCD), there are support groups, communities, and resources that can help. Learn more about these organizations and how they can help by clicking the links below.
National Organization for Rare Diseases:
https://rarediseases.org/
National Institutes of Health:
https://rarediseases.info.nih.gov/
Global Genes:
https://globalgenes.org/disease/ucd/groups/
National Urea Cycle Disorders Foundation:
http://www.nucdf.org/
Urea Cycle Disorders Consortium:
https://www1.rarediseasesnetwork.org/cms/UCDC
Connecting Families UCD Foundation:
https://ucdfamily.org/
New York Mid-Atlantic Caribbean Regional Genetics Network:
https://nymacgenetics.org/
EveryLife Foundation for Rare Diseases:
https://everylifefoundation.org/
Center for Parent Information & Resources:
https://www.parentcenterhub.org/
Parent to Parent:
https://www.p2pusa.org/parents/
Family Voices:
https://familyvoices.org/
If you or a loved one is experiencing symptoms or needs help managing a UCD, talk to a doctor as soon as possible.
