About us Who we are Who we are Dystonia UK is the only UK national charity dedicated to helping people living with dystonia. First established as The Dystonia Society in 1983, by a small group of people living with dystonia, today, we are Dystonia UK and the only UK national charity dedicated to helping people living with dystonia. As we have evolved as a charity, we have looked at new ways to reach our members and supporters. Through our 'Reach Out, Reach All' campaign we want to reach the whole of the dystonia community. Never forgetting our founders’ aim to support all people living with dystonia, being a patient led organisation is still at the heart of our ambitions today. We connect the community across the UK at online and in person events, support group meet ups and through our ‘Dystonia Matters’ magazine and podcast. We empower the community providing advice and information through our website, webinars and events. We champion our community through national campaigns and lobbying for improved NHS services and better awareness of the condition. We celebrate our community at every opportunity magnifying their voices and experiences. Dystonia UK is at the heart of the dystonia community - children and adults with dystonia, carers and clinicians, fundraisers and families, healthcare professionals and our amazing members and supporters, all working side by side. If you or someone you know has been diagnosed with dystonia, Dystonia UK and our volunteers are here for you. Our mission In the UK there are thought to be around 100,000 people living with dystonia, a neurological condition that causes uncontrollable muscle spasms. Our mission is simple. We exist to give hope and support to everyone living with dystonia and to create UK and worldwide awareness. We think dystonia matters because: an estimated 100,000 people in the UK have dystonia people with dystonia deserve improved access to treatments there is still no cure for dystonia Our values Our values guide everything we do. They shape how we support people, work together, and use our resources to creating lasting positive change. We are here for everyone living with dystonia.