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Get in touch FAQs

How do I share my story?

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Thank you for considering sharing your story with others.

Your stories are the most powerful and true account of what living with dystonia is like. 

We want you to share your story in your own time and your own way, but if you’re wondering about some of the practicalities, here are some handy tips.

Published: 1st June, 2021

Updated: 23rd August, 2021

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How do I contact you?

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If you have a question that isn't on our FAQs page or want to get in touch with us for another reason, we'd love to hear from you!

To ensure your message reaches the right person and you get the speediest response from us, please contact the relevant department below:

📧General enquiries / feedback: [email protected]

📖Help & Information: [email protected]

💷Fundraising: [email protected]

🥳Events: [email protected] 

💜Membership: [email protected]

You can also leave us a voicemail on 📞 020 7793 3651 📞 or even send us a letter ✉️ Dystonia UK, 3rd Floor, 89 Albert Embankment, London, SE1 7TP ✉️

Please note the Dystonia UK team are not medically qualified so it is always best to direct these types of questions to your GP or primary medical team.

Published: 2nd June, 2021

Updated: 12th July, 2021

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How do I make a complaint?

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We are really sorry you wish to make a complaint. We hope to resolve your concern as soon as possible.

Let us know how we can help by:

  • email ([email protected])
  • post (Dystonia UK, 3rd Floor, 89 Albert Embankment, London, SE1 7TP)
  • telephone (020 7793 3651)

Published: 3rd June, 2021

Updated: 12th July, 2021

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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)


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