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




Here is a list of support websites that families have found useful.  Click on the links below to view other sections.

Joubert Syndrome Foundation | Print |

The Joubert Syndrome Foundation is a worldwide organisation and provides updated medical information, research and a bi-annual conference.

National Society For Epilepsy | Print |

National Society for Epilepsy (NSE).  Advice and information on all aspects of epilepsy.

Special Kids In The UK | Print |

Special Kids in the UK have a vast amount of resources and bring families together for friendship and support.

Kids Days Out | Print |

Days out for children, with details of wheelchair access for disabled, throughout Britain

Nystagmus.co.uk | Print |

This website is designed for parents, friends, family and teachers who are interested in finding out about nystagmus, including personal experiences of a teenager/child, facts and the scientific details.


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