About Us

Dystonia UK is the only UK national charity dedicated to helping the 100,000 people in the UK affected by dystonia.

We exist to give hope and support to those living with the condition and to create UK and worldwide awareness.

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.

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. Visit our website to find out more about our work and to sign-up for regular updates.

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