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

Dystonia Matters Podcast

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

Published:

Author: Dayna Ferdinandi

Reach Out, Reach All Webinars

Reach Out, Reach All Webinars featuring experts in neurological movement disorders.

Published:

Author: Bernie McMahon

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


707,000

people reached in the last 3 months

£27,000

on average spent on research a year

550

enquirers supported a year

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Latest news

  • Dystonia Medication standards

    28/02/24 | A project aiming to improving quality of life of children and young people with dystonia through the development of consensus standards of medication use. Read more

  • Dystonia UK Awards 2024 voting open!

    01/06/2024 | Voting is now open! Vote now for your 'Masked Hero', 'Dystonia Superstars', 'Young Champion', and 'Popular Podcast'. Read more

  • Volunteers' Week 2024

    04/06/2024 | Thank you to all our volunteers for making a difference! Read more

Latest events

  • Great North Run 2024

    Event Type: Half-Marathon. Date: Sunday Sunday 8th September 2024. Location: Newcastle. Registration Fee: Free! Fundraising Target: £500. Read more

  • Royal Parks Half Marathon 2024

    Event Type: Half Marathon. Date: Sunday 13h October 2024. Location: London. Registration Fee: Free! Fundraising target: £350. Read more

  • Brighton Half Marathon 2025

    Event Type: Half Marathon. Date: Sunday 2nd March 2025. Location: Brighton. Registration: Free! Fundraising Target: £250 Read more