The Dystonia Society was established in 1983 by a small group of people affected by dystonia, and the aims and mission of those original founders are the core of our work today.

Our mission is a world without dystonia 

To achieve this mission: 

We aim to support and advocate for people living with the impact of dystonia to ensure they experience the best quality of life for all of their life whilst we drive forward towards critically needed treatments and ultimately a cure. 

We do this by: 

  • raising awareness of all forms of the debilitating set of conditions known as dystonia,   
  • by supporting and advocating for those affected by a diagnosis of dystonia through our support and advocacy services and local support group network, 
  • by facilitating research into critical advances in treatments and ultimately the search for a cure. 

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