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



Charity Funding & Aid

Click on the images for more information.

Action For Kids | Print |
Ability House
15a Tottenham Lane
N8 9DJ
Tel: 02083 478111
BDF Newlife | Print |
BDF Centre
Hemlock Business Park
Hemlock Way
WS11 7GF
Cerebra | Print |
Cerebra Second Floor Offices
The Lyric Building
King Street
SA31 1BD 
Children Today | Print |
Children Today Charitable Trust
The Moorings
Rowton Bridge
Elifar Faundation | Print |
The Elifar Foundation
22 Florentine Way
Get Kids Going | Print |
Get Kids Going
10 King Charles Terrace
Sovereign Close
Aidis Trust | Print |

The Aidis Trust specialises in assistive computer technology for the disabled. Our aim is to help people, regardless of their disability, to gain the most from today's computer technology.

We are an independent charity with over 35 years of experience working with assistive computer technology. The Aidis Trust charity provides FREE advice and technical support to disabled people and people who support them across the UK. Our mission is to improve independence for disabled people through using assistive computer  technology. Assistive technology can be, for example, larger keyboards, head pointers or specialist software such as magnification and screen-reading software for the visually impaired. We work with local, regional and national organisations to ensure that the best possible support is provided to you through our services. All our services are designed to help you understand what assistive technology is available, how it can work and how it can benefit you or those you care for.

Our FREE Services

  • Helpline: Our helpline supports disabled people with technical issues. Our technical advisors offer assessments, giving impartial advice on assistive technology to suit an individual's needs. In addition, our helpline staff offers support on all aspects of computing, using the latest technical support technology.
  • Free training and awareness courses to disability groups and organisations, carer's and parents to demonstrate how hardware adaptations and specialist software can enable a disabled person to effectively use a computer.
  • Website: Alternative help and support can be offered through our LIVE chat, Facebook and Twitter. Just visit our website for more information.

If you or someone you know has a disability or health condition that makes technology difficult or impossible to use, or you would like to find out more, please contact us on our FREE HELPLINE 0808 800 009 or visit our websitewww.aidis.orgor email us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Registered Charity number: 1053961

Caudwell Charitable Trust | Print |

Minton Hollins Building
Shelton Old Road
ST4 7RY 
Child Care Action Trust | Print |

Child Care Ation Trust is a charity helping to provide funding towards costs of alternative treatments/therapies or equipment needed.

Childrens Hope Foundation | Print |
Head Office
15 Palmer Place
N7 8DH
T: 020 7700 6855
F: 020 7700 4432


Family Fund | Print |
Family Fund Unit
4 Alpha Court
Monks Cross Drive
YO32 9WN
Tel: 0845 1304542
Happy Days | Print |

They fund and organise holidays, days out and theatre trips throughout the UK for disadvantaged young people with special needs. They help young people in special needs schools, hospitals, hospices and they also help individual families.


Page 1 of 2

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.
JSUK does not endorse any products nor can we be held responsible for any external links and their content.
Copyright 2010 - 2015  WWW.JSUK.ORG