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

We were established in 1983 as The Dystonia Society, by a small group of people affected by 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, and our 'Reach Out, Reach All' series. We want to reach the whole of the dystonia community however we never forget our founders’ aim to support all people affected by dystonia and being a patient led organisation is still at the heart of our ambitions today.

Our mission

We exist to give hope and support to everyone living with dystonia and to create UK and worldwide awareness.

We have set out to achieve this through our 70+ physical and online support groups, advocacy services, lobbying governmental bodies and by being active members of policy making organisations in order to affect real change in the neurological world.

As well as producing a comprehensive magazine ‘Dystonia Matters’ which updates members on the latest dystonia associated news we also host the annual conference ‘Dystonia Matters Live’. This brings together medical professionals and other clinicians as well as 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.

We are here for everyone affected by dystonia.