‘What is dystonia?’ The most common question we get asked, and one we are sure is all too familiar for our community. Despite there being around 100,000 people living with dystonia in the UK, awareness of the condition is still low, even amongst medical professionals.

And we know that lack of awareness is more than just a question on repeat. It can cause delays to diagnosis, impact the quality of care you receive and increase stigma and isolation. That’s why it is so important for us to continue to increase awareness and advocate on behalf of the dystonia community.

"I want dystonia to be recognised and understood everywhere, starting with doctors or other healthcare professionals being able to recognise it and get people the diagnosis and treatment that they need." Joanne

Our Awareness Raising Guide has been designed to support everyone from or in support of our community on their journey of raising awareness. We share tips & tricks of how to raise awareness of dystonia in your local community, ideas to get you started, guides for supporting the campaign, and templates to follow. It makes raising awareness super simple, breaks down barriers to getting started and ultimately, helps unify our community’s voice for change.

We want to empower you to tell the world that Dystonia Matters. We believe that by working together we can have a positive impact and help improve the lives of people living with dystonia. If you agree then this guide is for you. Please join the movement at any time and have your voice heard!

Other helpful resources

• Awareness raising guide explainer
• A guide to 'Writing to your MP, MSP, MLA or MS'
• Letter to your MP template
• Key Messages
• Email footer templates

Other useful links

• Write to them www.writetothem.com/
• Find Your MP https://members.parliament.uk/FindYourMP
• Start your own petition www.gov.uk/petition-government