This month there will be an opportunity for everyone interested in learning more about nutrition and Duchenne to participate in two online focus group …
DMD Care UK Nutrition Working Group – Online Focus GroupsRead More
Impact of NRS Healthcare Closure: Statement from the Chair of Action Duchenne, Vicky Pleydell
Urgent action needed to protect families affected by Duchenne muscular dystrophy I am deeply concerned about the devastating impact the collapse of …
World Duchenne Awareness Day 2025
Family: The Heart of Care September 7th marks World Duchenne Awareness Day. The 7th day of the 9th month in honour of the 79 exons on the …
Update from Roche regarding Delandistrogene Moxeparvovec (Elevidys)
On July 25th, Roche 5 the European Medicines Agency’s (EMA's) Committee for Human Medicinal Products (CHMP) unfortunately provided a negative opinion …
Update from Roche regarding Delandistrogene Moxeparvovec (Elevidys)Read More
Roche to resume Elevidys orders for ambulatory patients outside of the US
On July 29th, Roche announced its readiness to immediately resume new orders and shipments of Elevidys for ambulatory patients outside the United …
Roche to resume Elevidys orders for ambulatory patients outside of the US Read More
Entrada Therapeutics Shares Update on Duchenne Muscular Dystrophy (DMD) Programs
Entrada Therapeutics has released its financial results for the second quarter of 2025, which included important updates on its clinical programs for …
Entrada Therapeutics Shares Update on Duchenne Muscular Dystrophy (DMD) ProgramsRead More
Join us this World Duchenne Awareness Day
Join us this World Duchenne Awareness Day This year the theme for World Duchenne Awareness Day is “Family: The Heart Of Care”. This theme …
Roche Announces Temporary Pause to New Orders of Delandistrogene Moxeparvovec To Key Countries Outside the US.
Today (23rd of July), Roche issued a community update regarding its Duchenne program, specifically addressing the availability of delandistrogene …
Head of Fundraising and Communications
Role: Head of Fundraising and Communications Responsible To: CEO Hours: 22.5 hours per week (0.6 FTE) Location: Remote, …
Edgewise Therapeutics Reports Positive Results on Sevasemten Program for Becker and Duchenne Muscular Dystrophies
Edgewise Therapeutics has shared positive results in its Sevasemten program for Becker and Duchenne muscular dystrophies. Highlights include:● New …
We’re Hiring: Support Team Lead
Support Team Lead Role: Support Team Lead Responsible To: Head of Operations & Events Hours: 30 hours (0.8 FTE) Location: Remote, …
Yes I Can Activity Day – Scotland
Yes I Can Activity Day - Scotland Are you aged 12 and over, living with Duchenne and live in Scotland? Join Action Duchenne in Scotland …
