Policy work

As the only UK-wide charity representing people with dystonia, we use our influence to get you the best possible support, care, and treatment. Our policy work is an important part of helping to raise awareness of dystonia at a government level and in the eyes of the public.

We think it 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

Your voice is at the heart of everything we do and our policy statements are based directly on feedback we have from the dystonia community through a number of different channels:

• listening to your stories
• analysing survey results
• talking to our members and supporters
• meeting people at our events
• feedback from group coordinators
• speaking to health & social care professionals and other experts

To get involved and help raise your views you can head to 'Your Voice Heard'. Here we will notify you of important surveys, available focus groups and any other relevant opportunities.

Based on your feedback, our current top priorities are:

• ensuring early diagnosis, timely access to treatment and promoting best practice across the UK
• finding ways to help support mental health and well-being and reducing social isolation
• making sure everyone has access to information and support at diagnosis and in particular focussing on reducing digital exclusion
• ensuring suitable financial support is available
• promoting research in the field of dystonia

We work directly with key stakeholders as well as working in collaboration with other charities and organisations in the world of neurology, health and social care, and disability rights.

Our main partners are:

• Neurological Alliances across the UK
• Medical and Pharmaceutical Companies
• International dystonia organisations and charities
• Health & Social Care representatives
• Organisations supporting patient rights and advice

Keep an eye on our news page for updates on the latest campaigns, consultations and reports that we've used to ensure your voice is heard.