Searching for a cure, Improving lives

About us

Action Duchenne has a team of 10 permanent staff dedicated to meeting the main challenge set by our founders Dr Janet Hoskin and Nic Catlin : To be a leader in supporting innovative research to cure and treat Duchenne.

Working out of a community Centre in Leytonstone, the team is split into fundraising, research, campaigning, education and the duchenne muscular dystrophy registry.

The team is overseen by its trustees: each trustee (with one exception for our legal representation on the board) is a mum, dad, aunt, uncle or grandparent of someone living with duchenne.  This composition driven again by our founders desire that the Charity is to be led by parents and young people affected by Duchenne and Becker Muscular Dystrophy.

Action Duchenne works across the UK, the EU, the US and the southern hemisphere seeking answers and support from all parts of the duchenne community: researchers, clinicians, physicians, pharmacological companies and other duchenne charities.  In doing so, we may not know all of the answers for you…….but we will know who get the answer from.

So please, if you need answers, call or contact us on any of the phone numbers or e-mails you can find on our site.  If you’re not sure who to direct you enquiry to, then please email us at and one of the team will get back to you.

We are all here to help you, to help us, to find a cure for Duchenne.


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Summit presents data from Phase 1 clinical programme of lead utrophin modulator, ezutromid

June 22nd, 2017

Summit Therapeutics has today announced the presentation of clinical data from two Phase 1 clinical trials

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What Raxone being given approval through the EAMS scheme means for the Duchenne community

June 22nd, 2017

  Over a number of years we have worked closely with Santhera Pharmaceuticals and other

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Duchenne – How do you measure a life?

Living with Duchenne – an animation

Taking charge of Duchenne

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