We use surveys and government consultations to collect important data that form key evidence in reports and other influencing work that we produce.
It is so important that the voice of those living with dystonia is represented in this work so we will often share these opportunities with our community.
If you are interested in supporting this work and making your voice heard, please take a moment to look at the surveys open to take part in below.
For anyone who has a form of dystonia or is related by blood to someone who does.
For people living with a genetic confirmation of myoclonus dystonia syndrome associated to a mutation in epsilon-sarcoglycan (SGCE or DYT11) gene or a parent or carer of someone living with the condition. Takes 10-15 minutes.
For people living with dystonia or close to someone who does.