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



Visitor Book

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Kelly: Hello

just found this web site today and am pleased that there is now something in the uk that can help parent/carers with children with JS. We have a son who is 11 with JS and when we first found out about it. there was nothing over here that we could join to get help other than in the US. so want to say thank you to all those that set it up and keep it going only wish that had found it sooner. thank you Kelly :-)

Monday, 01 November 2010

Karen: Hello

I have been reading through your gallery and I would like to say I have a 17 year old son called Charlie and he was diagnoised with Jouberts when he was 2 years old he went to "special" nursery schools but he did go to main stream primary and secondary and is currently atttending college - he uses a walking frame and communication aid, he also uses makaton and enjoys life so keep smiling they are all worth their weight in gold

Thursday, 28 October 2010

JSUK: Thanks to the Web Creators

Many Thanks to Chris & Gail for putting together the JSUK website

Chris & Gail have donated their time to help us out. JSUK committe & members would like to say a very BIG THANK YOU for keeping us online.

Monday, 05 July 2010

Chris: New Website

It has been a pleasure working with Faith at JSUK to create this new website.

Wednesday, 23 June 2010


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