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

Bean Bag Bazaar | Print |

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

Dream Catcher Weighted Blankets | Print |

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

Handmade Hammocks | Print |

Lots of different hammock styles, could be a useful aid for swinging when a child has sensory issues.

Inchworm Shoes | Print |

Built right into INCHworm shoes is the iFit technology. The iFit technology allows you to GROW the size of the shoe with a simple push of the button, to provide your children with better fitting shoes that last up to three sizes longer. Inchworm shoes grow in half size increments. Just push the button on the side, and pull the toe of the shoe to adjust into the next size.
IncyWincy | Print |

IncyWincy specialize in Incontinence Swimwear for Children and Adults.

DisabledGear.Com | Print |

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

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.

Hatchbacks Footwear | Print |

Special shoes designed for use with AFO's.  Can be shipped from the US and also available in the UK , check out the store locator on their website. 

Inclusive Technology | Print |

The very best educational software, switches and computer access devices, simple communication aids and assistive technology for learners with special needs.

Jenx - Furniture for Special Needs Children | Print |

Jenx Limited designs and manufactures innovative, therapeutic products for children with special needs.


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You should always consult with a Medical Professional for medical advice.
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