Supporting researchers

Research has the power to transform understanding, improve treatment options, and bring real hope to the 100,000 people living with dystonia across the UK. At Dystonia UK, we’re here to support researchers who are committed to making that progress happen.

Whether you're developing new therapies, mapping symptoms, decoding mechanisms, or testing assistive technologies, what you are really doing is offering hope to a community living with an incurable condition that often feels forgotten.

“Every day I fight against dystonia, but it’s more and more difficult to cope with it on my own. Person-centred, dystonia-focused research can provide the hope and answers I and all of us with dystonia urgently need.” - DK

This is why involving people living with dystonia matters so much. Their lived experience strengthens research, shapes better questions, and leads to outcomes that genuinely improve lives. We’re committed to supporting patient and public involvement (PPI) that is inclusive, accessible and truly person-centred, ensuring research reflects the realities, needs and priorities of those living with dystonia.

How we support you

• Letters of support to help demonstrate community value, relevance, and lived-experience alignment in your funding applications
• Supporting participant recruitment by sharing opportunities for involvement through our website, Research Network, social channels and Dystonia Matters magazine
• Disseminating published research in accessible formats so findings reach the people they are designed to benefit