About us

The A-T Society

The Ataxia-Telangiectasia Society is a charitable company limited by guarantee, incorporated in England and Wales, in 2004, under company number 5177145. It is registered with the Charity Commission in England under number 1105528.

The Society uses the working name “A-T Society”.

Our vision

A world where no one need suffer from the devastating effects of A-T

Our mission

To improve quality of life and quality of care for people living with A-T while actively promoting research to lengthen lives and ultimately bring about a cure.

We do this by:

  • providing information and support to meet the challenges of living with A-T
  • working to achieve better, more coordinated health and social care services
  • promoting and funding high quality A-T research
  • speaking out to ensure that the voices of people affected by A-T are heard
  • raising awareness of A-T and gathering supporters and resources to help achieve our vision

While our primary care is for people with A-T and their families friends and carers, we support and work wtih all those who are affected by and work with A-T. We believe that we can best achieve our goals by working in full and open partnership with all those who share our aims and this approach is central to our work.

Relationships with other organisations

The A-T Society works closely with other organisations in the UK that share all or some of our aims, particularly Action for A-T, the Thomas Appeal and Ataxia UK.

The Society also enjoys good relations with other A-T patient support groups in the USA, France, Germany, Norway, Spain, Poland, Israel and Australia. It has established the A-T Clinical Research Network, to bring together researchers, clinicians and patient organisations with an interest in clinical research into A-T from around the world. 

To strengthen our ability to campaign on behalf of and meet the needs of people living with A-T, we are affiliated to:

Genetic Alliance UK

Rare Disease UK

The Neurological Alliance

The Association of Medical Research Charities ("AMRC")

Euro-Ataxia