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  • take-part-in-surveys
  1. Support us
  2. Your voice heard
  3. Take part in surveys

Take part in surveys

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.

Global Dystonia Registry

Global Dystonia Registry

For anyone who has a form of dystonia or is related by blood to someone who does. Read more

Published: 17th June, 2021

Author: Bernie McMahon

Myoclonus dystonia

Myoclonus dystonia

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. Read more

Published: 26th July, 2021

Updated: 27th July, 2021

Author: Bernie McMahon

NeuroLifeNow

NeuroLifeNow

For people living with dystonia or close to someone who does. Read more

Published: 29th January, 2021

Updated: 3rd February, 2021

Author: Bernie McMahon

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Showing 10 of 3

Latest

  • Keswick to Barrow sponsored walk

    Keswick to Barrow sponsored walk

    13/05/2022 | On Saturday 7th May five amazing teams took on the super challenging K2B and C2B sponsored walk, completing an incredible 40 and 20 miles!

  • Dystonia Matters Live 2023

    Dystonia Matters Live 2023

    Dystonia UK's annual conference.

  • Dystonia Matters Live 2022 postponed

    Dystonia Matters Live 2022 postponed

    07/05/2022 | Dystonia Matters Live 2022 has been postponed to the Summer of 2023

  • Dystonia UK Awards voting now open!

    Dystonia UK Awards voting now open!

    29/04/2022 | ‘Dystonia UK Awards’ voting now open! Vote now and have your voice heard.

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.

  • 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 common treatments?

  • What are the symptoms?

  • What are the causes?

  • Who does it affect?

  • What are the symptoms?

  • How will it affect my life?

  • Coronavirus and dystonia

    Coronavirus and dystonia

    11/02/2021 | We’re here for you. Here’s the latest guidance on coronavirus and dystonia, and where to get support.

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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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