Help and support Frequently asked questions The other FAQs Are you called Dystonia UK or The Dystonia Society? We are Dystonia UK! Originally established in 1983 as The Dystonia Society, by a small group of people living with dystonia, we rebranded in 2019 to reflect the growing needs of our community. 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).