• Helpline

    Sometimes it is helpful to talk to someone who understands: not only about the condition, but how you may be feeling. Our telephone Helpline is available from Monday to Thursday from 9am to 5pm to both members and non-members and to healthcare professionals. 020 7793 3650 Read more

Providing support, advocacy and information for anyone affected by the neurological movement condition known as dystonia


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What is dystonia?

Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain. It is estimated to affect at least 70,000 people in the UK. There are a large number of different types of dystonia which affect people in widely differing ways. Unfortunately there is not yet a cure.

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What treatment is available?

Various treatments are available for dystonia. These will be determined by the type and severity of the particular condition.

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Author: Bernie McMahon

How do I live with dystonia?

Most people do manage to develop effective strategies for coping with the challenges that their condition brings. Successful treatments to lessen their symptoms, effective pain control and the acquisition of sensory ‘tricks’ all help to make social situations easier.

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Author: Bernie McMahon

Dystonia News

  • Neurological patient experience survey

    Make your voice heard on dystonia care. Complete the Neurological Alliance survey to tell us about your experiences. Read more

  • Introducing your young champions

    We are so happy to introduce you to three of your new young champions. Read more

  • Thank you

    Thank you to everyone who attended our big Conference for Parents and Carers of Children with Dystonia on Saturday 22nd September. Read more

Fundraising Events

  • Prudential RideLondon 2019

    CYCLISTS WANTED! Prudential RideLondon, 3rd August, 2019 - the largest annual fundraising cycle event on the planet! Read more

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    Author: Sample Content

    Location: London, London

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  • Hampton Court Palace Half Marathon 2019

    Runners Wanted! 5th Hampton Court Palace Half Marathon, 17th March, 2019. Run at the historic venue and get your own unique, Tudor themed medal. Read more

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    Author: flavie belanco

    Location: Hampton Court Palace , Hampton Court Way, East Molesey, Surrey, KT8 9AU

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  • London Marathon 2019

    Were you successful in securing a place for London Marathon 2019? Or perhaps you know someone that was. The Dystonia Society is looking for runners to join Team Dystonia for the most famous running event in the world. Read more