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



Benefits & Services

An alphabetical list of all Benefits and Services, click the links below to see each catagory.

Occupational / Physical Therapy | Print |

Occupational / Physical Therapy

Provided by your local health authority.

They provide an individual programme for you to work on at home with your child.

They assess equipment needs and adaptations for your home.

They can refer you to a Speech Therapist.

Portage | Print |


A home visiting educational service for pre-school children (under 5) and their families with additional support needs.

Radar Key - Public Toilet Access | Print |

Radar Key

You can purchase a Radar Key for access to public toilets. Some of these public toilets are located at various petrol stations.

You will have to pay £3.50 for the key but is refundable if you return the key with proof of purchase.

For more information contact Radar Telephone: 0207 403 3020

Click on the Radar Logo for more information.

Reduction In Council Tax | Print |
Reduction in Council Tax
You may be eligible for a reduction in your council tax if your chilld uses their wheelchair or specialist seating indoors or has had a bathroom/kitchen adapted for their needs.
Contact your Local Council to request a form to fill in.
Click on the Directgov link for more information.
Road Tax Exemption | Print |

Road Tax Exemption

If your car is used solely for the use of your child and their needs and they recieve the higher rate mobility component of D.L.A. you can request an exemption for vehicle tax.

Contact  Disability Living Allowance Unit and request an exemption certificate DLA404. 

Telephone: 0845 712 3456

You can also contact the D.V.L.A. in Swansea, Telephone:0870 240 0009

Social Services | Print |


Provide Respite, care at home and sometimes financial help towards other costs.

Direct Payments:

You are entitled to receive payments to buy services from an organisation or employ a person in place of the Social Services respite provision.


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