Dystonia UK

Dystonia UK

At a glance


  • Health and well being / research and care

Other details

Organisation type: 
Geographical remit: 
National - Britain


Dystonia UK is the only national charity dedicated to helping people with dystonia.

We were established in 1983 as The Dystonia Society, by a small group of people living with dystonia and in 2019 we rebranded to become Dystonia UK to better reflect our growing community.

As we have evolved as a charity, we have looked at new ways of reaching out to our members and supporters, from webinars and surveys to podcasts and magazines. Through our 'Reach Out, Reach All' campaign we want to reach the whole of the dystonia community. Never forgetting our founders’ aim to support all people living with dystonia, being a patient led organisation is still at the heart of our ambitions today.

We think dystonia matters because:

  • an estimated 100,000 people in the UK have dystonia
  • people with dystonia deserve improved access to treatments
  • there is still no cure for dystonia


We have set out to achieve this through our in-person and online support groups, active lobbying on behalf of people living with dystonia and through running national awareness campaigns.

As well as this we provide up to date dystonia information and news through our booklets, website, and comprehensive magazine 'Dystonia Matters'. We also hold regular events including an annual conference 'Dystonia Matters Live' where we bring together medical professionals and other clinicians along with members and supporters to discuss advances in research as well as ways to live well with this sometimes debilitating and isolating condition.

Dystonia UK is children and adults with dystonia, carers and clinicians, fundraisers and families, medical professionals and our amazing members and supporters, all working side by side.

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