We are so excited to announce the launch of Markin' Time, Mark Silverman's debut solo album! In 2020 during the first lockdown, our Trustee Mark …
Innovative and sustainable FAIR solution for Duchenne Data Platform
Duchenne Parent Project in the Netherlands announced that their patient-led online registry (The Duchenne Data Platform) has successfully …
Innovative and sustainable FAIR solution for Duchenne Data PlatformRead More
Book giveaway for newly diagnosed families
Thanks to the amazing Gemma Kier, author of The Abilities in Me Children's Book Series, we are delighted to be able to send this amazing book out to …
Dyne Therapeutics announce application to start exon 51 skipping clinical trial
Dyne Therapeutics, Inc. announced on 2nd December 2021 the submission of an Investigational New Drug (IND) application to the U.S. Food and Drug …
Dyne Therapeutics announce application to start exon 51 skipping clinical trialRead More
Santhera and ReveraGen announce positive topline results with Vamorolone after completion of the Vision_DMD Study
Action Duchenne is pleased to share the announcement from Santhera Pharmaceuticals and ReveraGen BioPharma, Inc., of new results after completion of …
International Conference and community
Blog by Florence Boulton, National Director - written in Cambridge just after we finished delivering the Action Duchenne International Conference …
World Toilet Day 2021
Who cares about toilets? 3.6 billion people do. Because they don’t have one. Today, nearly half the world’s population live without a 'safely …
Action Duchenne International Conference embodies powerful Duchenne community
OVER the weekend of 13 and 14 November 2021, Action Duchenne welcomed families, researchers, clinicians and pharmaceutical companies from across the …
Action Duchenne International Conference embodies powerful Duchenne communityRead More
Conference agenda, brochure and joining instructions
We are looking forward to welcoming you to this year's Conference. Flexibility The flexibility of the online platform means you can dip into …
Conference agenda, brochure and joining instructionsRead More
TREAT-NMD Statement on Stem Cell Tourism
We receive many questions from families who are interested in stem cell therapy as a potential treatment for Duchenne. Today, Treat-NMD (an …
Budget Statement 2021 – Home adaptations uncertainty
For families living with Duchenne, adapting our homes to ensure that they are suitable our children and young people is a huge and often overlooked …
Budget Statement 2021 – Home adaptations uncertaintyRead More
