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  • How we support you
  1. Help and support
  2. How we support you

How we support you

We understand that a diagnosis for yourself or someone you know can be an incredibly challenging reality.

We want anyone living with dystonia to:

  • be able to connect with others
  • understand their diagnosis and treatment
  • have timely access to treatment
  • have a good standard of care
  • be accepted in the wider society

To support you with these aims we:

  • facilitate the 70+ physical and online support groups that are run by our amazing volunteer coordinators which give the opportunity to share experiences and meet others with dystonia
  • provide information through our website, social media channels, booklets and 'Dystonia Matters' magazine
  • host webinars featuring medical professionals and specialist speakers
  • lobby on behalf of dystonia patients to engage governmental bodies and raise awareness of the condition
  • are active members of policy making organisations in order to affect real change in the treatment and services for neurological conditions
  • build relationships with pharmaceutical companies and medical professionals to ensure the voice of dystonia patients is heard
  • produce the 'Dystonia Matters' podcast to magnify the voice of people living with dystonia
  • create national campaigns to increase recognition of the condition across the UK and worldwide
  • join together with our sister dystonia organisations across the world to raise increased awareness during Dystonia Awareness Month
  • host virtual and in person events including the annual 'Dystonia Matters Live' conference and 'Living with Dystonia Days' which bring together medical professionals and other clinicians to discuss advances in research as well as ways to live well with the condition

Frequently asked questions Campaigns
Webinars Dystonia Matters Podcast

Published: 9th September, 2019

Updated: 29th July, 2021

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89 Albert Embankment
London SE1 7TP
[email protected]
020 7793 3651

Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)


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