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



Newly Diagnosed


If you have just received the news that your child has Joubert Syndrome, we understand that you may be going through a range of emotions and feelings right now and perhaps for some time to come.

We recognise that it is difficult when you have just learned that your child has a rare genetic disorder to take in all the information you have received, you may feel overwhelmed and have questions to ask with perhaps no one able to answer them.

As parents of JS children we will have asked some of the same questions you are asking yourself right now, such as what does the future hold for your child?

You need not feel isolated and can take comfort in the knowledge that there are other parents out here who are willing to share their experiences with you.

Many parents of children with special needs face additional challenges to parenthood, nonetheless many parents say their children have enriched their lives in lots of ways!


Usefull Links

FAQ´s Questions other parents have asked.
Medical Evaluation Annual Medical Recomendations. Please use the guidance from the JSRDF website.
Contact JSUK Contact us for more information help and support.

Information contained on this website is not intended to replace information you have received from Doctors or other Health Professionals.
You should always consult with a Medical Professional for medical advice.
JSUK does not endorse any products nor can we be held responsible for any external links and their content.
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