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 UK and the BBC

    15/12/2023 | Our Director of Fundraising and Communications, Dayna Ferdinandi, joined Ben Boulos from BBC Breakfast, to film a piece raising widespread awareness about dystonia. Read more

  • 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 nominations now open!

    19/04/2024 | The 'Dystonia UK Awards' are back and bigger than ever! The awards shine a spotlight on our incredible community, giving you the opportunity to nominate and vote for your very own 'Dystonia Superstar', 'Masked Hero' and 'Young Champion'. Read more

Latest events

  • TCS London Marathon 2024

    Event Type: Marathon. Date: Sunday 21st April 2024. Location: London Read more

  • Great North Run 2024

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