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  • Who we are
  1. About us
  2. Who we are

Who we are

Dystonia UK is the only UK national charity dedicated to helping people living 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


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, 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.

We are here for everyone living with dystonia.

Published: 9th September, 2019

Updated: 6th July, 2021

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Registered office

89 Albert Embankment
London SE1 7TP
[email protected]
020 7793 3651

Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)


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