It is so lovely to see so many familiar faces here, to meet new ones as well. My name is Florence Boulton. I’m the CEO of Action Duchenne. I joined …
Action Duchenne Annual International Conference 2024: Welcome RemarksRead More
Sarepta Announces the Discontinuation of MOMENTUM Study and Development of SRP-5051
We are disappointed to learn of the news regarding Sarepta’s SRP-5051 MOMENTUM study. Sarepta has decided to stop developing SRP-5051, a potential …
Sarepta Announces the Discontinuation of MOMENTUM Study and Development of SRP-5051Read More
Charity Dinner Dance
Charity Dinner Dance In March 2023, Ruth Taylor and her amazing committee members held an incredible Charity Dinner Dance to fundraise for Action …
Annual General Meeting: Friday 8th November 2024
Annual General Meeting 2024 The Trustees of Action Duchenne would like to express their gratitude for the continued support from the Duchenne …
Help Develop Nutrition Information Resources for Duchenne Muscular Dystrophy
If you are a caregiver of/or a young person aged 7-25 with Duchenne, researchers from the University of Glasgow, and Edge Hill University, need your …
Help Develop Nutrition Information Resources for Duchenne Muscular DystrophyRead More
Wave Life Sciences Announces Positive Interim Data from FORWARD-53 Clinical Trial Evaluating WVE-N531 in Boys with Duchenne Muscular Dystrophy Amenable to Exon 53 Skipping
Wave Life Sciences has shared their promising new interim results for the ongoing FORWARD-53 trial. The ongoing open-label trial, involves eleven boys …
Swissmedic Announces Acceptance of Santhera’s Market Authorisation Application for AGAMREE (Vamorolone) in Duchenne Muscular Dystrophy
Santhera Pharmaceuticals (SIX: SANN) has announced that Swissmedic, the Swiss Agency for Therapeutic Products, has begun reviewing the marketing …
Action Duchenne: Delivering Hope & Change in 2024
We are pleased to share our Impact 2024 report, which highlights our progress and achievements over the past year. It showcase the hard work and …
Together for World Duchenne Awareness Day: Celebrating Strength and Progress
"On World Duchenne Awareness Day 2024, we come together as a community—families, friends, carers, and supporters—alongside everyone living with …
Together for World Duchenne Awareness Day: Celebrating Strength and ProgressRead More
Help Improve Understanding of Nutrition and Weight Management in DMD
Do you have 15 minutes and want to help improve our scientific understanding of the influence of nutrition and weight management in Duchenne muscular …
Help Improve Understanding of Nutrition and Weight Management in DMDRead More
The Action Duchenne Conference was a game-changer for me as a new Duchenne dad.
The Action Duchenne Conference was a game-changer for me as a new Duchenne dad. It gave me the knowledge I needed through clear talks on treatment and …
The Action Duchenne Conference was a game-changer for me as a new Duchenne dad.Read More
Clinical Trial Update – PepGen Announces Positive Data from Ongoing CONNECT1-EDO51 Phase 2 Trial for Treatment of Duchenne Muscular Dystrophy
PepGen Inc., announced on July 30th 2024, positive clinical data from the first dose cohort (5 mg/kg) of PGN-EDO51, its lead investigational candidate …
