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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

 



 

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just diagnosed!

just diagnosed!

Well, hello are we glad to have found you guys! We have a rather lovely small one who is just diagnosed (4 years old) as having this syndrome after years of prods and dead ends!  Feel some sort of relief as well as uncertainty as to what the future will hold.  Looking forward to talking to people who may finally understand x

Katekit01
Kate Kitchen
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Re: just diagnosed!

Hi
Glad you found us, looking forward to chatting more.
The Facebook group is much more active than the Forum as you will have noticed!
Faith

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