Skip over main navigation
  • Log in
  • Basket: (0 items)
Dystonia UK
  • Twitter
  • Facebook
  • Instagram
  • YouTube
Membership Donate
Menu
  • About dystonia
    • What is dystonia?
    • What causes dystonia?
    • Types of dystonia
    • Diagnosis and treatment
  • Help and support
    • How we support you
    • The Info Hub
    • Just diagnosed
    • Kids, Carers & Families
    • Living with dystonia
    • Your stories
    • Your local support group
    • Our events
    • Frequently asked questions
  • Membership
    • Dystonia UK Membership
    • Join or renew your membership
  • Support us
    • Donate
    • Become a member
    • Fundraise for us
    • Other ways to give
    • Partner with us
    • Volunteer for us
    • Campaigns
    • Your voice heard
    • Shop
  • About us
    • Who we are
    • The team
    • Our governance
    • Policy work
    • Research
    • Professionals
    • News
  • Admin
    • Log in
  • Basket: (0 items)
  • Our governance
  1. About us
  2. Our governance

Our governance

Dystonia UK is governed by a board of trustees who provide strategic direction and ensure strong governance.

Trustees are elected by our members for three-year terms and play a vital role in shaping our future. Each year, the board appoints a Chair, Vice Chair and Treasurer to lead governance, operational and financial decision-making.

The board delegates work to committees and the Senior Management team, who implement decisions and report back through agreed monitoring processes, ensuring accountability, effectiveness, and alignment with our mission and values.

Our policies

Our policies guide our work, ensuring we operate responsibly, transparently and with the highest standards of accountability and care.

  • Privacy policy
  • Safeguarding policy

Our reports

You can download the most recent Annual Report & Accounts that we submit to the Charity Commission and Companies House as PDFs below.

  • 2024/25
  • 2023/24
  • 2022/23
Dystonia UK Membership

Dystonia UK Membership

Why should you join Team Dystonia UK as a member? You should join us if, like us, you think dystonia matters. Read more

Published: 9th September, 2019

Updated: 15th January, 2026

Author:

The team

The team

The Dystonia UK team - from staff to trustees to patrons and ambassadors to medical advisors! Read more

Published: 9th September, 2019

Updated: 18th February, 2026

Author:

Who we are

Who we are

Dystonia UK is the only UK national charity dedicated to helping people living with dystonia. We were established in 1983 as The Dystonia Society, by a small group of people living with dystonia and in 2019 we rebranded to become Dystonia UK to better reflect our growing community. Read more

Published: 9th September, 2019

Updated: 15th January, 2026

Author:

Back to top

Latest

  • A warm welcome to our new CEO

    A warm welcome to our new CEO

    22/05/2026 | The Board of Trustees is pleased to announce the appointment of our new Chief Executive Officer, Alex Feis-Bryce.

  • Alex Feis-Bryce

    Alex Feis-Bryce

    Chief Executive Officer

  • TCS London Marathon 2027

    TCS London Marathon 2027

    Event type: UK Race. Date: 25th April 2027. Location: UK. Registration fee: £75. Fundraising target: £2,500.

  • TCS London Marathon 2027

    TCS London Marathon 2027

    Event type: UK Race. Date: 25th April 2027. Location: UK. Registration fee: £75. Fundraising target: £2,500.

Most read

  • What is dystonia?

    What is dystonia?

    Dystonia is a neurological condition that is estimated to affect at least 100,000 people in the UK. Learn more about it here.

  • 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 causes?

  • What are the common treatments?

  • What are the causes?

  • Who does it affect?

Tag cloud

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

Subscribe to receive regular e-news from Dystonia UK

* indicates required
  • Sitemap
  • Terms & Conditions
  • Privacy Policy
  • Update your communication preferences


  • Twitter
  • Facebook
  • Instagram
  • YouTube

Registered office

89 Albert Embankment
London SE1 7TP
[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)

Help Dystonia UK

Donate Volunteer Fundraise