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 therapy websites that families have found useful.  Click on the links below to view other sections.

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.

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.

Southerland Society | Print |

Osteopathy is a system of diagnosis and treatment which works with the structure and function of the body. Cranial osteopathy is a refined and subtle type of osteopathic treatment that encourages the release of stresses and tensions throughout the body through balancing the body and cerebral-spinal fluid. It is a very gentle approach and may be used in a wide range of conditions for people of all ages, from birth to old age.

Deveny Method Foundation | Print |

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

RDA | Print |

Riding for the disabled, find a local group to benefit from horse therapy.


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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