Dystonia UK is the only UK national charity dedicated to helping people living with dystonia.
We think dystonia matters because:
- an estimated 100,000 people in the UK have dystonia
- people with dystonia deserve improved access to treatment
- there is still no cure for dystonia
We exist to give hope and support to everyone living with dystonia and to create UK and worldwide awareness. We have set out to achieve this through our 70+ physical and online support groups, active lobbying on behalf of people living with dystonia and through running national awareness campaigns.
As well as this we provide up to date dystonia information and news through our booklets, website, and comprehensive magazine "Dystonia Matters'. We also hold regular events including an annual conference 'dystonia Matters Live' where we bring together medical professionals and other clinicians along with members and supporters to discuss advances in research as well as ways to live well with this sometimes debilitating and isolating condition.
Dystonia UK is children and adults with dystonia, carers and clinicians, fundraisers and families, medical professionals and our amazing members and supporters, all working side by side.
The Essex Dystonia Support Group supports local people with or caring for those who have dystonia. We support people who have any form of the neurological movement disorder known as dystonia and their families through the promotion of awareness and research.