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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

 



 

Links

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.



1 Voice | Print |

Network and support for children and families using communication aids.

 
AISJAC | Print |

Italian Association of Joubert Syndrome

 
Bean Bag Bazaar | Print |

A company providing a wide range of indoor & outdoor bean bags in different shapes & sizes.

 
British Kidney Patient Association | Print |

UK registered charity, working to improve the quality of life for adults & children with chronic kidney disease. They provide information & advice, also grants to help patients & families cover the costs of domestic bills, hospital travel, education & holidays.

 
Carers UK | Print |

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

 
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.

 
Bobath Centre | Print |

The main aim of Bobath is to encourage and increase the child's ability to move and function in as normal a way as possible.

 
BT Education | Print |

BT’s Education programme (free speaking and listening resources, and more,  for schools)

 
Cerebra | Print |

Cerebra is a unique charity set up to help improve the lives of children with brain related conditions through researching, educating and directly supporting children and their carers.

 
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