In this session Clair Warner, SEATTS PD Team Manager, shares her decades of specialist knowledge and experience to help our families navigate the …
Niall O’Doherty’s birthday fundraiser
Do you want to join me in making a difference? I'm raising money in aid of Action Duchenne and every donation will help. Thank you in advance for your …
Results from Italfarmaco’s EPIDYS trial
Italfarmaco Group announces positive topline data from Phase 3 trial showing beneficial effect of Givinostat in patients with Duchenne muscular …
Indoor Skydiving Experience Giveaway!
*Competition now closed* A fantastic experience worth £67.99! The winner receives the equivalent free-fall time of 3 real skydives, flight …
Edgewise Therapeutics announces positive 2-month interim results from the ARCH open label study of EDG-5506 in adults with Becker muscular dystrophy (BMD)
This article summaries the 2-month interim results shared by Edgewise Therapeutics from the ARCH study, evaluating EDG-5506 in adults with Becker …
Register for ‘Yes I can’ online and residential
'Yes I can' online workshops Every fortnight, on a Wednesday at 7pm, Ravi will be joined online by expert speakers, covering a range of important …
Impact from the first fortnight on the road
What a fortnight we've had! Cambridge, Oxford, Cardiff and Swansea - you've all been wonderful! Alex and Mehreen have loved every second of …
Nationwide researchers announce restoration of full-length Dystrophin in humans
In Duchenne muscular dystrophy, dystrophin protein is absent or partially functional due to mutations in the dystrophin gene. Multiple therapeutic …
Nationwide researchers announce restoration of full-length Dystrophin in humansRead More
Transformational transition project launches
Action Duchenne are launching an aspirational project, providing young people living with Duchenne with crucial support, training, guidance and …
Paid role with RS Components
A global company RS Components has approached us as they’d like to encourage people living with Duchenne to apply for a content role with …
Pfizer to re-start its global Phase 3 Trial of Investigational Gene Therapy for Ambulatory Patients with Duchenne Muscular Dystrophy
Pfizer has announced on 28 April 2022 they have received approvals to re-start the Phase 3 study evaluating their gene therapy for Duchenne muscular …
Science on Tour – a parent’s perspective
By Jess Breeze, Duchenne mum Our first step into the community My husband and I attended a Science on Tour session shortly after we received our …












