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

We want anyone affected by 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, leaflets and ‘Dystonia Matters’ magazine
  • 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
  • participate in Dystonia Awareness Month to increase recognition of the condition across the UK and worldwide
  • run 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