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



FAQ´s | Print |

Joubert Syndrome has a wide spectrum of abilities, both

physically and cognitively so it is difficult to be definite about what your child will or will not be able to achieve.

These are some of the most common questions asked

  • Will my child be able to walk?
    This is a difficult question to answer as some children do walk, some walk but with limitations and some are unable to. There is room for optimism though as children have been known to reach this milestone at and beyond the age of 10yrs.
  • Will my child be able to sit up?
    The outlook is good and it would seem that many achieve this goal.
  • Will my child die?
    This is a genetic disorder not a terminal illness.
    (However you should be aware there is a risk that some children can develop kidney/liver disease. Other children may also have extra complications alongside JS.)
  • Are there any adults with JS?
    Yes there are adults with JS and as the medical professionals become more aware of this syndrome more adults and children are being diagnosed.
  • Will my child be able to lead a normal life?
    Again this is a difficult question to answer, children are reaching adulthood and attending college, living independently and holding down jobs, others need extra help to achieve some or all of these goals.

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.
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