Please donate what you can to help
Your tax-free donation helps us fulfill our goals of SUPPORT * EDUCATE * RESEARCH for people affected by JSRDs.
Whether you are affected, a caregiver, or related to someone who is or was affected, your information* could be the key. Please take a few moments to answer a few questions today.
*only one survey is necessary per affected individual
Joubert syndrome and its related disorders are rare genetic disorders characterized by decreased muscle tone, difficulties with coordination, abnormal eye movements, abnormal breathing pattern and cognitive impairment. Joubert syndrome is one of a growing group of disorders called "ciliopathies," caused by dysfunction of a part of the cell called the cilium. Disruption of cilium function likely explains the incidence of eye, kidney and liver problems in individuals with Joubert syndrome.
The Joubert Syndrome & Related Disorders Foundation (JSRDF):
This website is funded entirely by private contributions made by members and friends of the JSRDFoundation, an organization run 100% by volunteers.
JSRDF Membership is an important part of ensuring our longevity and ensuring the day-to-day operation of the Foundation which is run 100% by volunteers. Your membership helps us continue to work hard on your behalf and we have exciting things planned. We have brought you a redesigned website that provides families with additional resources not offered before such as: Patient registry, webinars and other special MEMBERS ONLY offerings.
2:00 PM @ Westin O'Hare