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:
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:
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:
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:
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.
We work with a number of clinical advisers and clinical networks in the UK. This is a two way process with advisers providing and validating our information and advice services, and with Dystonia UK promoting the needs and concerns of patients.
Each type of dystonia is rare, and we need to work at an international level to identify best practice and achieve the best outcomes in research and development.
We work closely with medical and pharmaceutical companies, increasing their awareness and understanding of the impact of dystonia.
Health and Social Care are devolved to the governments in each part of the UK. As members of the national neurological alliance umbrella bodies, we can ensure that the voice of people with dystonia is heard.
We signpost patients to a range of organisations that have specific expertise in issues relating to patients’ rights and providing advice on issues such as employment, benefits, and social care.