Group Counselling We know that being a Duchenne parent or carer is tough, and that a diagnosis like Duchenne impacts many of the relationships in …
An intervention for parents of boys with DMD is under development, please share your experiences and needs
We are developing an intervention for parents of boys with DMD and want to knowmore about your experiences and needs! If you are interested and want …
Edgewise Therapeutics Announces Positive 12-Month Topline Results From The ARCH Open Label Study Of EDG-5506 In Adults With Becker Muscular Dystrophy (BMD)
Edgewise Therapeutics announced today positive 12-month topline results from the ongoing ARCH study, an open label, single-center study assessing the …
Registration is OPEN for the Action Duchenne Annual International Conference 2023
Registration is OPEN for the Action Duchenne Annual International Conference 2023 FREE tickets for Duchenne families as well as every young …
Roche UK issues a statement following Sarepta’s Press release regarding ELEVIDYS FDA decision
Roche UK issues a statement following Sarepta's Press release regarding ELEVIDYS FDA decision Following the press release from Sarepta released on …
Sarepta Therapeutics Announces FDA Approval of ELEVIDYS, the First Gene Therapy to Treat Duchenne Muscular Dystrophy
Sarepta Therapeutics announced U.S. Food and Drug Administration (FDA) accelerated approval of ELEVIDYS (delandistrogene …
Join National Director Florence Boulton as part of our Vitality London 10,000 Team!
Join National Director Florence Boulton as part of our Vitality London 10,000 Team! On September 24th 2023, the hugely popular Vitality London …
Join National Director Florence Boulton as part of our Vitality London 10,000 Team!Read More
D.AD’s Night – Dads Against Duchenne
D.AD's Night - Dads Against Duchenne It is a difficult place being a Dad in Duchenne and there isn’t much opportunity to speak with others face to …
Join our At Home Superheroes!
Join our At Home Superheroes! Ivelina, mum of Presian ( 5 year old DMD hero ), tells us what motivated her family to sign up for the Superheroes …
My viewpoint as a bereaved parent by Angela Stringer
Is it wrong to feel relieved now that I am bereaved? I wish my son was still here and to be able to enjoy his company. Sadly not. …
My viewpoint as a bereaved parent by Angela StringerRead More
Thank you to our volunteers
Thank you to our volunteers 1st - 7th of June is National Volunteers Week and we want to say thank you! In 2022/23 the team here at Action …
Fighting for the future
Fighting for the future While we continue our much needed day to day work supporting our families, I want to share with you the recent developments …
