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.

Challenging Behavior Foundation | Print |

The work of the Challenging Behavior Foundation is primarily aimed at helping those with severe learning disabilities. Resources include information sheets & a family worker which are free to family carers.

The CBF wants to see children & adults with severe learning disabilities, who are described as having challenging behaviour, having the same life opportunities as everyone else, including home life, education, employment and leisure.

Conductive Education | Print |

Conductive Education teaches children and adults with physical disabilities such as cerebral palsy, dyspraxia, multiple sclerosis, Parkinson’s, stroke and head injury how to overcome their movement problems to lead more independent, dignified and fulfilled lives.

Deveny Method Foundation | Print |

The Deveny Method is a Hungarian approach to therapy using a special technique and Analytical Gymnastics.

Dream Catcher Weighted Blankets | Print |

Weighted bankets including advice on weighted therapy for sleep and calm regarding sensory issues.

Epilepsy Action | Print |

Epilepsy action is the working name of the British Epilepsy Association. It provides a wide range of services and information to support anybody with an interest in epilepsy.

Changing Places | Print |

Changing Places, campaigns for accessible toilets, and provides a list of accessible toilets in the UK.

Contact A Family | Print |

Contact a Family provides advice, information and support to the parents of all disabled children. They also enable parents to get in contact with other families, both on a local and national basis.

DisabledGear.Com | Print |

DisabledGear.com is an easy to use website for buying and selling second hand disability equipment.

Enquire | Print |

The Scottish Advice Service for additional support for learning

Fledglings | Print |

Fledglings helps parents/carers of a child with special needs to find simple, affordable solutions to practical problems. Offering a free product search service as well as keeping products in stock.


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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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