Click here to learn about our 2014 Membership Changes!

We are celebrating our 22nd year of providing information about the disorder to families all over the world!

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)

  • Is a nonprofit organization that has been providing information about the disorder to families all over the world since 1992!
  • Is an international network of parents who share knowledge, experience, and emotional support.
  • Offers a networking list, newsletter, and a biennial conference.
  • Plays an important role in educating physicians and their support teams as well as increasing public awareness.

This website is funded entirely by private contributions made by members and friends of the JSRDFoundation.

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JSRDF Conference 2015

We are pleased to announce that the 12th Biennial Joubert Syndrome and Related Disorders Conference will be held in Chicago!  Click Here For More Details

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Volunteers Needed

As we are a nonprofit organization, we are always looking for volunteers. Please click here to see our current volunteer openings.

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Donate what you can to help

Your tax-free donation helps us fulfill our goals of SUPPORT * EDUCATE * RESEARCH for people affected by JSRDs.
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Become a Member Now

JSRDF Membership is an important part of the Foundation's business. It helps us continue to work hard on your behalf
and we have exciting things planned for 2013. We are excited that a redesigned website will provide families with additional
resources not offered before such as: Online Chats, Webinars and other special MEMBER ONLY offerings.


Already a member? You can simply click here to login. Also, did you know that you can setup a automatic yearly payment for your membership? Click here to learn more!

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