As Dystonia UK celebrates its 40th year, it’s a valuable chance to reflect on our organisation and the ways in which we support the community. As we plan for the future, we wanted to make sure your voice is heard.

We were established in 1983 by a small group of people living with dystonia. Their mission was to “give hope and support to everyone living with dystonia and to create UK and worldwide awareness.”

Over the past 40 years how people access information and prefer to communicate has changed significantly. While our mission remains the same, the ways in which we support our community must continue to evolve. In an ever-changing world, it’s important that our support and services remain relevant and valuable to you.

In the survey we’ve created, we will ask you a few questions about you and about our work. Your answers help Dystonia UK to plan our future services and to ensure the charity’s money is directed at activities that make the most difference to you and others living with dystonia in today’s world. There is no right or wrong answer; we are just interested in your views.

It’s important we hear from as many people in the dystonia community as possible to make sure our work is truly reflective of those we support, so we do hope you will take the short time to let us know your thoughts.

Who can take part?

• We would like to hear from anyone who uses or might use our services - whether you have been diagnosed with dystonia yourself or are related to or care for someone who has dystonia.

• You can fill out the survey yourself or on behalf of someone you care for.

• The survey is open to people in the UK or abroad.

• You must be over 18 to take part.

How long will it take?

The survey takes about 10 minutes to complete. If you have a Google account you can log in to pause and save your progress. If you do not wish to do this you can skip the login step.

How will the survey data be used?

Dystonia UK will use the data to help make decisions about future plans and services. The survey findings will be used by Dystonia UK and individual data will not be shared.

Is the survey anonymous?

Yes. The survey is completely anonymous. It’s not possible to identify you from your responses.

Closing date:

The survey will close at midnight on Saturday 30th September 2023.

Please note this survey is now closed.

If you are unable to fill out the survey online and require a paper copy or need to take part over the phone, please leave us a message on 020 7793 3651 or drop us an email, with your name, contact details and request.

Published: 8th June 2023

Updated: 3rd October 2023