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  • sbs-policy-work
  1. About us
  2. Policy work

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.

Health and social care representatives

Health and social care representatives

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. Read more

Published: 27th July, 2023

Author: Bernie McMahon

International dystonia organisations and charities

International dystonia organisations and charities

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. Read more

Published: 27th July, 2023

Author: Bernie McMahon

Medical and pharmaceutical companies

Medical and pharmaceutical companies

We work closely with medical and pharmaceutical companies, increasing their awareness and understanding of the impact of dystonia. Read more

Published: 27th July, 2023

Author: Bernie McMahon

Neurological Alliances across the UK

Neurological Alliances across the UK

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. Read more

Published: 27th July, 2023

Author: Bernie McMahon

Organisations supporting patient rights and advice

Organisations supporting patient rights and advice

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. Read more

Published: 27th July, 2023

Author: Bernie McMahon

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Latest

  • Your Questions Answered with Dr Miles Humberstone

    Your Questions Answered with Dr Miles Humberstone

    Q&A with Dr Miles Humberstone. This webinar took place on 26th September 2023 during 'Dystonia Awareness Month'.

  • Fernanda Aguilar Perez

    Fernanda Aguilar Perez

  • Emily Birden

    Emily Birden

  • Thank you for an amazing Dystonia Awareness Month 2023!

    Thank you for an amazing Dystonia Awareness Month 2023!

Most read

  • What is dystonia?

    What is dystonia?

    Dystonia is a neurological movement disorder that is estimated to affect at least 100,000 people in the UK. Learn about it here and request an information booklet.

  • What are the symptoms?

  • What causes dystonia?

    What causes dystonia?

    The cause of dystonia is not yet fully understood, in some cases at least it can be attributed to a chemical imbalance in the part of the brain called the basal ganglia, a part which helps to control movement.

  • What are the symptoms?

  • What are the symptoms?

  • What are the common treatments?

  • What are the common treatments?

  • What are the causes?

  • What are the causes?

  • Who does it affect?

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Airdrie DS Group Cambridgeshire DS Group Edinburgh DS Group Hertfordshire DS Group Kent DS Group Lancashire & Fylde DS Group Liverpool DS Group London and Surrey DS Group Manchester DS Group North East DS Group North Shropshire Borders DS Group Northern Ireland DS Group Oxford DS Group Torbay & Exeter DS Group West Midlands DS Group West Sussex DS Group

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[email protected]
020 7793 3651

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)


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