Searching for a cure, Improving lives

Who we work with

Action Duchenne’s board of trustees have directed that the Charity works with both the national and international duchenne communities since it is only by close cooperation we can seek to find a cure, as a community, for duchenne and becker.  The list below is not exhaustive, but illustrates the breadth of duchenne organisations that we currently work with:

Parent Project Muscular Dystrophy (USA)the Duchenne Alliancethe Jett Foundationthe United Parents Project Muscular DystrophyJoining jackthe Duchenne Children’s Trust, Alex’s wish, Duchenne nowthe Duchenne Research Fund, Duchenne Ireland, Duchenne Iceland, The Muscular Dystrophy CampaignHarrison’s FundParent Project Italy Parent Project Spain, and Parent Project Greece.  This list is not exhaustive and you will see it increase as we continue to liaise and work with the world-wide duchenne community in our fight to find a cure for duchenne and becker.

We also work with a range of other organisations, these to help with our campaigning, advocacy, education and research work. You can find them here.

We also work with world-wide research establishments: more details can be found by clicking on the research links

We are currently working with our members to establish an accessible house swap scheme. You can find more details here.


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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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