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




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.

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.

Sure Start | Print |

Sure Start

A government programme that helps to bring together early education, services and support for families.

T.V. License | Print |

T.V. License

If anyone in the household is registered blind then you are entitled to a 50% reduction on your license.

Contact T.V. Licensing, Telephone: 0870 241 6468


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