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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

 



 

Services


Blue Badge Scheme | Print |

Blue Badge Scheme

The blue badge is a parking permit that allows a range of parking concessions.

You can apply for the badge from age 2 and automatically qualify if you recieve the higher rate mobilty component of D.L.A. or registerd blind.

You may also qualify if you have a permanent disability that makes you unable to walk or which makes walking very difficult.

Contact you Local Council for an application form. 

 
Cinema Exhibitors Association Card | Print |

The Cinema Exhibitors' Association Card

The cinema card is a national card that can be used to verify that the holder is entitled to one free ticket for their carer that is accompanying them to the cinema.

You will need to meet one or more of the following criteria:

1. Be in reciept of D.L.A. or attendance allownce.

2. Be a registered blind person.

The card is valid for 3 years from the date of issue and costs £5.50 for processing fee.

Application forms are available from UK cinemas supporting this card or the contact details:

The Card Network
Network House
ST.Ives Way
Sandycroft
CH5 2QS
Telephone: 0845 123 1292

Click on the CEAL logo for more information.

 
Disabled Facilities Grant | Print |

Disabled Facilities Grant

A Disabled Facilities Grant is a local council grant to help towards the cost of adapting your home.

There is no means testing for families of disabled children under 19. 

Disabled Facilities Grants are available in England, Wales and Northern Ireland only.

Contact your local council for more information.

Scottish residents should contact the social services department of their local council for information on any grants that may be available.

 
Free Nappies | Print |

Free Nappies

Usually allowed from age 3, but for some boroughs it may be older.

They are also other incontinence products available.

Request the information from your GP, Health Visitor or Incontinence service.

 
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 |

Portage 

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

 
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