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

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.

Makaton | Print |

Makaton is a simple sign & symbol communication system, a charity organisation with lots of ideas, advice & provision of a regular e-mail newsletter.

Newlife Foundation | Print |

Purchase disabled childrens equipment from a UK child health & research charity. They also provide publications, a nurses manned helpline and equipment grants.

STEPS | Print |

Charity that provides a FREE Developmental Toy and Switch Postal Lending Library service to individual children and hospices.

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.

National Kidney Federation | Print |

The NKF is the national charity in the United Kingdom Run by Kidney Patients for Kidney Patients.

RNIB | Print |

There are around two million people in the UK with sight problems and RNIB (Royal National Institute of Blind People) is the leading charity offering practical support and information to anyone with a sight problem. Our pioneering work helps - not just with braille, Talking Books and computer training but with imaginative and practical solutions to everyday challenges.


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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