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Our Syndrome. Your Information.

Our best hope for finding new treatments and raising awareness is your participation in JS-LIFE, the JSRDF patient-centered registry.

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

We are celebrating our 22nd year of providing information about Joubert syndrome 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, a patient-central research registry, and a biennial conference.
  • Plays an important role in educating physicians and their support teams as well as increasing public awareness.

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JS-LIFE Registry

JS-LIFE, the Joubert Syndrome Link to Information and Family Exchange, is a participant-centered registry for all worldwide, to accelerate much needed research and awareness for JSRDs!! Click here to begin!


More details, FAQ on JS-LIFE here!

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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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Membership Information

Click here to learn about our recent changes to membership! Not a member? Sign Up Here for access to videos and members-only content.

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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.

This website is funded entirely by private contributions made by members and friends of the JSRDFoundation, an organization run 100% by volunteers.

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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.
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Become a Member Now


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.

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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Pete Asman
JSRDF Treasurer
1415 West Ave.
Cincinnati, OH 45215

Contact us

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