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Established in 1983 as The Dystonia Society by a small group of people affected by dystonia, 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.

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