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.

1 Voice | Print |

Network and support for children and families using communication aids.

AISJAC | Print |

Italian Association of Joubert Syndrome

Carers UK | Print |

Carers UK is the voice of carers. They provide free factsheets and booklets for carers.

Changing Places | Print |

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

Enquire | Print |

The Scottish Advice Service for additional support for learning

Aidis Trust | Print |

Has been developed to help Disabled People make best use of information and communication technology by giving information, help and support on all aspects of disability computing.  Also provides free software to download.

ASINJOU | Print |

Spanish Association of Joubert Syndrome.

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.

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.

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.


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