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 info@actionduchenne.org 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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Registry

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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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