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



View our events

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Join the DMD registry for access to clinical trials


Summit to Extend Ongoing PhaseOut DMD Clinical Trial of Ezutromid in Patients with DMD

March 27th, 2017

  Introduction from Michelle Avery (Summit Therapeutics): Today, we’ve announced that we intend to proceed

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Amazing London Marathon Dinner at Jamie’s Italian!

February 7th, 2017

  On Saturday 3 February Andrew Parkinson and Andrew Pearson, two of our London Marathon

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Positive Preclinical Research on the Edasalonexent (CAT-1004) Program

January 6th, 2017

  Catabasis announced the publication of preclinical data on the edasalonexent program, a potential disease-modifying

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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