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

  • A clinical tool for real-time visualization and analysis of neck muscles for cervical dystonia

    09/08/2023 | Dystonia UK was pleased to award seed funding in 2016 to Professor Ian Loram and his team at Manchester Metropolitan University for their research project. In this article, Prof Ian Loram explains the learnings and next steps for turning the proof of concept into a robust clinical tool. Read more

  • 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

Latest events

  • TCS London Marathon 2023

    Event Type: Marathon. Date: Sunday 23rd April 2023. Location: London Read more

  • Ford RideLondon-Essex

    Event Type: Cycling. Date: 28th May 2023. Location: London. Registration Fee: £55. Fundraising Target: £350. Read more

  • Great North Run

    Event Type: Half-Marathon. Date: Sunday 10th September 2023. Location: Newcastle. Registration Fee: Free! Fundraising Target: £500. Read more