Overview
Dystonia is a neurological condition that is estimated to affect at least 100,000 people in the UK.
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 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