We exist to give hope and support to those living with dystonia. Creating UK and worldwide awareness.

Upcoming events

From local support group meet ups to national events, this is where you’ll find everything happening across the Dystonia UK community.

Published:

Author: Bernie McMahon

Dystonia Matters Podcast

The Dystonia Matters Podcast! Sharing personal stories and talking to members of the dystonia community.

Published:

Author: Dayna Ferdinandi

Frequently asked questions

Whether you've been recently diagnosed or been living with dystonia for a number of years, it's normal to have questions. We've put together some of our most frequently asked questions to help navigate the journey. If you can't find the answer you are looking for, you can always get in touch, and we will do our very best to help you.

Published:

Author: Bernie McMahon

Our Impact


600,000

people reached in the last year

£27,000

on average spent on research a year

4,300

enquirers supported in the last year

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Latest news

Fundraise for us

  • Give as you Live

    Give as you Live Online is a free and easy way to raise money for Dystonia UK, just by shopping online. Read more

  • Great North Run 2026

    Event Type: UK Race. Date: 13th September 2026. Location: UK. Registration Fee: Free! Fundraising Target: £500. Read more

  • TCS London Marathon 2027

    Event type: UK Race. Date: 25th April 2027. Location: UK. Registration fee: £75. Fundraising target: £2,500. Read more