Raxone: A Guide for the Community

In partnership with fellow organisations, Muscular Dystrophy UK, Duchenne UK, the Duchenne Family Support Group, and DMD Pathfinders, we have produced two guides for families and healthcare professionals to educate and answer questions on the drug and EAMS process. Read more

Duchenne Standards of Care: Bone health & endocrine management

Dr. Jarod Wong explains Bone Health and Endocrine Management in Duchenne muscular dystrophy in a video of his presentation. Read more

Duchenne Standards of Care: Genetic diagnosis

Annemieke Aartsma-Rus explains about the importance of genetic diagnosis of Duchenne muscular dystrophy. Read more

Our vision

Action Duchenne has a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy. Read more

How to raise funds through supermarkets

Every penny you raise through your fundraising helps fund cutting edge research and clinical trials into potential treatments to benefit everyone living their lives with Duchenne. Read more

Runners we salute you!

Whatever distance you have pounded the streets this year, you can feel proud to be part of a team that has covered over 1,250 miles and contributed to over £64,000 worth of fundraising! Read more

Action Duchenne Christmas Appeal

Jonathan Stringer lived until he was 27. Some people with Duchenne have longer, but many don’t. With your support we can change this. Text DCHN79 £(amount) to 70070 Read more

Supermarket bag packing

If you would like to organise a bag pack for us, here are a few handy hints and tips to get you started! Read more

Research Strategy

Our latest research strategy published in 2017 Read more

How do we choose research to fund?

We have a thorough peer review process, making sure that each project is investigated before we provide funding. Read more

Conference 2018 sponsors

Thank you to our Action Duchenne International Conference 2018 sponsors. The support of these organisations help us put on an event to benefit as many people as possible, in the international Duchenne muscular dystrophy community. Read more

Hear from previous conference attendees

Hear from families as they share their thoughts and feelings about the Conference. Read more

Conference registration

Register for the Action Duchenne International Conference 2018 Read more

Three Nations walking challenge resources

Following in the footsteps of the Cwmbran depot in 2017, join the Three Nations Virgin Pulse walking challenge this summer 2018. Read more

Vivek Gohil - young person living with Duchenne

Watch Vivek Gohil chat to Peter Duffy at our International Conference 2017. Vivek is a co-editor with Peter on the media and campaigns channel Muscle Owl. Read more

Lizzie Deeble - Family Ambassador

Lizzie is a much loved part of the Action Duchenne family following her son Sebastian's diagnosis with Duchenne in 2016. Read more

Manjula Gohil - parent story

Manjula Gohil, mother of the wonderful Vivek, gave us an insight into her life and how things have changed since Vivek was diagnosed with Duchenne. Read more

GDPR updating personal information

Please let us know if the personal information that we hold about you needs to be corrected or updated. Read more

Shelley Simmonds

Fraser is the happiest boy you could ever wish to meet, we are proud to be his mummy and daddy. His sister is amazingly kind-hearted and gentle with him, he could not ask for a more loving sibling. We live month by month and take things as they come, our mindset to life has changed and we appreciate every day. Nothing escapes us, we take nothing for granted. Read more

Adam - Taekwondo Champ!

Adam, who started Taekwondo when he was six years old, has worked his way through each of the belts, despite his condition deteriorating. Adam regularly attends Dorset Marital Arts club with a smile on his face. Read more