Searching for a cure, Improving lives

Campaign Volunteering



Action Duchenne are dedicated to improving the lives of everyone affected by Duchenne muscular dystrophy. Our campaigning strategy and successes are inextricably linked to the grass roots engagement and activism of the Duchenne community and the central role you play in driving our initiatives forwards.


If you’re interested in supporting the campaigns work of Action Duchenne, and standing shoulder to shoulder with us in fighting for the changes you want to see, please contact our Campaigns Officer, Stephen Hoffman, on 020 8556 9955 or via


Here’s just a few ways you can get involved!

  • Respond to guidance within our weekly newsletter providing you with platforms to get involved
  • Get in touch with your MP and push for their recognition and support of our campaigns
  • Contact your local press or radio and highlight key issues in your area
  • Maintain a vocal presence on social media to maximise pressure and awareness
  • Feedback on questionnaires, surveys, and public consultations to inform policy makers and shape legislation


Support Action Duchenne with a monthly or one off donation



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Action Duchenne launches new Research Strategy for Duchenne muscular dystrophy

November 17th, 2017

  Action Duchenne, a leading UK-wide patient and parent-led organisation for Duchenne Muscular Dystrophy, is

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Long-term microdystrophin pre-clinical work, moving towards a potential therapy restores muscle function in canines

July 26th, 2017

Promising microdystrophin pre-clinical work, moving towards a potential therapy has shown to restore muscle function

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FDA new approach would reduce number of patients treated with placebo

December 11th, 2017

The U.S. Food and Drug Administration (FDA) has published its recommendation for a new approach

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Results announced from survey ‘Juggling care and daily life’

December 11th, 2017

The 17th October 2017 was an important date for the rare disease community.  The highlights of the

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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