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 full list of websites that families have found useful, click on the links below to view the relevent list.

Click on the images to visit the sites.

Liberator Ltd. | Print |

Liberator Ltd is a world-leading supplier of products, training and support for communication, inclusion and independence.

Meru | Print |

Meru design and custom make specialist equipment for use at home, school, college, in hospital or at play when no ready made soloution exists to meet a child or young persons needs.

National Society For Epilepsy | Print |

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

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.

Project Art Works | Print |

Project Art Works is an artist-led organisation, based in Hastings, East Sussex, creating opportunities for young people & adults, who have complex needs, to communicate and express themselves through art.

Makaton | Print |

Makaton is a simple sign & symbol communication system, a charity organisation with lots of ideas, advice & provision of a regular e-mail newsletter.

National Kidney Federation | Print |

The NKF is the national charity in the United Kingdom Run by Kidney Patients for Kidney Patients.

Newlife Foundation | Print |

Purchase disabled childrens equipment from a UK child health & research charity. They also provide publications, a nurses manned helpline and equipment grants.

OTdirect | Print |

OTdirect is an independent site for Occupational Therapists, OT Assistants and OT students, produced by OTs in their spare time. It aims to provide not only links to useful resources on the web, but study notes, practice updates and training listings.This is a not-for-profit site, with no paid advertising, commercial interests or outside funding — just links to organisations that deserve support.

Rackety´s | Print |

Special needs clothing for indoors and outdoors including swimwear.


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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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