The Dystonia Society was established in 1983 by a small group of people affected by dystonia, with the support of the late Professor David Marsden.

The Society was established to promote the welfare of people who are affected by any form of the neurological movement disorder known as dystonia. The Society aims to do this by promoting awareness of the disorder, by supporting research and by undertaking welfare initiatives. It does this on a national level and through its network of local support groups.

The Dystonia Society was formally registered as a charity (no. 1062595) in 1984 and also as a company limited by guarantee (no. 3309777). The Board of Trustees are elected by the membership of the charity and the Society has a Staff Team to carry out the day to day work of the organisation. The Society also has a Patron and a Royal Patron who provide invaluable support.

The charity is also a leading member of Dystonia Europe.

The trustees of the Society have identified four principal areas as the focus of our current activities:

  • Improving access to treatment services. 
  • Providing improved support and information for the individuals affected. 
  • Progressing research activities. 
  • Raising awareness of the condition.