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You are here: Home / News

Impact of NRS Healthcare Closure: Statement from the Chair of Action Duchenne, Vicky Pleydell

September 8, 2025 by Lizzie Cox

Urgent action needed to protect families affected by Duchenne muscular dystrophy I am deeply concerned about the devastating impact the collapse of …

Impact of NRS Healthcare Closure: Statement from the Chair of Action Duchenne, Vicky PleydellRead More

World Duchenne Awareness Day 2025

September 6, 2025 by Lizzie Cox

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 …

World Duchenne Awareness Day 2025Read More

Update from Roche regarding Delandistrogene Moxeparvovec (Elevidys)

August 22, 2025 by Mehreen Arif

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 

August 15, 2025 by Katie Endacott

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

August 7, 2025 by John Marrin

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

July 25, 2025 by Lizzie Cox

Join us this World Duchenne Awareness Day This year the theme for World Duchenne Awareness Day is “Family: The Heart Of Care”. This theme …

Join us this World Duchenne Awareness DayRead More

Roche Announces Temporary Pause to New Orders of Delandistrogene Moxeparvovec To Key Countries Outside the US.

July 23, 2025 by John Marrin

Today (23rd of July), Roche issued a community update regarding its Duchenne program, specifically addressing the availability of delandistrogene …

Roche Announces Temporary Pause to New Orders of Delandistrogene Moxeparvovec To Key Countries Outside the US.Read More

Edgewise Therapeutics Reports Positive Results on Sevasemten Program for Becker and Duchenne Muscular Dystrophies

June 27, 2025 by Mehreen Arif

Edgewise Therapeutics has shared positive results in its Sevasemten program for Becker and Duchenne muscular dystrophies. Highlights include:● New …

Edgewise Therapeutics Reports Positive Results on Sevasemten Program for Becker and Duchenne Muscular DystrophiesRead More

Yes I Can Activity Day – Scotland

June 12, 2025 by Lizzie Cox

Yes I Can Activity Day - Scotland Are you aged 12 and over, living with Duchenne and live in Scotland?  Join Action Duchenne in Scotland …

Yes I Can Activity Day – ScotlandRead More

Could you become a mentor for young people living with Duchenne?

June 6, 2025 by Lizzie Cox

Do you have lived experience of Duchenne, have a skill you want to share, pass on practical tips about developing hobbies, moving into further …

Could you become a mentor for young people living with Duchenne?Read More

REGENXBIO reports new positive functional data from Phase I/II Affinity Duchenne Trial of RGX-202

June 6, 2025 by Lizzie Cox

REGENXBIO announced new positive interim data from the Phase I/II AFFINITY DUCHENNE trial. Updates include positive functional, safety and biomarker …

REGENXBIO reports new positive functional data from Phase I/II Affinity Duchenne Trial of RGX-202Read More

PepGen Discontinues Development of PGN-EDO51 for Duchenne Muscular Dystrophy

May 29, 2025 by John Marrin

We are sharing an important update with our community regarding PepGen Inc.'s investigational therapy, PGN-EDO51, for Duchenne muscular dystrophy …

PepGen Discontinues Development of PGN-EDO51 for Duchenne Muscular DystrophyRead More

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