Ataxia-Telangiectasia Society

Ataxia-Telangiectasia Society

At a glance

Causes

  • Health and well being / research and care

Other details

Geographical remit: 
National - Britain

Objectives

The A-T Society is a small national charity supporting people with ataxia-telangiectasia, a rare but devastating and life-shortening genetic condition  and funding research to develop treatments and ultimately a cure. Our offices are in Harpenden in Hertfordshire.

A-T is a complex and progressive, genetic disease which affects many different parts of the body and causes severe disability in children and premature death. It causes increasing physical disability from early childhood and weakens the immune system, leading to respiratory disorders and significantly increasing the chance of the child developing leukaemia and other cancers. While the condition is rare, it is estimated that around 1 in 200 people carries the faulty gene,

The A-T Society is in touch with almost every person with a diagnosis of AT in the United Kingdom. We provide information, a listening ear and practical support and advocacy to people with A-T and their families. We also provide events where families can come together and young people with the condition can try new activities and gain confidence. We aim to enable them to live their lives to the full, while we work to improve care treatments and fund and promote research to find a cure. This involves both providing support and building up confidence in both people with the condition and their families.

We know from constant feedback and the attendance leve at our events that our support and our activities are incredibly important to people living with A-T in the UK. But our information and our research work have an international impact.

Activities

The A-T Society is the only organisation in the UK which supports people affected by A-T and funds research into treating and ultimately curing the condition.  The Society:

  • provides information via a range of media – leaflets, website, phone contact, newsletters etc. to families affected by A-T, professionals, schools and the public
  • provides practical support and advocacy through two professional family support staff, as well as financial grants and access to a counsellor
  • organises information and support events, activity days and respite breaks
  • in partnership with the NHS set up and now jointly administers national specialist clinics at Nottingham and Papworth
  • Works to improve clinical care and services for people with A-T
  • Promotes, commissions and funds research into the cause and cure of A-T

No current opportunities

Search for volunteer opportunities with other organisations.