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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

 



 

Challenging Behavior Foundation | Print |

The work of the Challenging Behavior Foundation is primarily aimed at helping those with severe learning disabilities. Resources include information sheets & a family worker which are free to family carers.

The CBF wants to see children & adults with severe learning disabilities, who are described as having challenging behaviour, having the same life opportunities as everyone else, including home life, education, employment and leisure.

 

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