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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


 

Joubert Syndrome UK

 



 

Links

Here is a full list of websites that families have found useful, click on the links below to view the relevent list.

Click on the images to visit the sites.



Weight 2 Go | Print |

A UK based company making weighted blankets and other weighted products.

 
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