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  • About Us
    • Our Purpose
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  • Get Support
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    • Register for Support
      • Time Out – A Space for Mums
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    • Webinar recordings
    • Bite-Sized Duchenne Science Live
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      • Diagnosis of Duchenne Muscular Dystrophy
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      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
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News

You are here: Home / News

Update on the European Medicines Agency recommendation not to renew Translarna marketing
authorisation in the European Union

22 September 2023 by Lizzie Cox

Update on the European Medicines Agency recommendation not to renew Translarna marketingauthorisation in the European Union On Friday, 22 …

<strong>Update on the European Medicines Agency recommendation not to renew Translarna marketing<br>authorisation in the European Union</strong>Read More

Action Duchenne Expresses Deep Concern Over CHMP’s Negative Opinion on Translarna™ for Duchenne Muscular Dystrophy

15 September 2023 by Lizzie Cox

Action Duchenne Expresses Deep Concern Over CHMP's Negative Opinion on Translarna™ for Duchenne Muscular Dystrophy Action Duchenne expresses …

<strong>Action Duchenne Expresses Deep Concern Over CHMP’s Negative Opinion on Translarna™ for Duchenne Muscular Dystrophy</strong>Read More

Introducing Science Live

7 September 2023 by Lizzie Cox

Action Duchenne Launches Science Live Video Project Empowering Duchenne families, bringing research into your home We are thrilled to announce …

Introducing Science LiveRead More

Online Event for Newly Diagnosed Families

7 September 2023 by Lizzie Cox

Online Event for Newly Diagnosed Families Has your family had a recent Duchenne diagnosis? Are you feeling lost, alone and overwhelmed? Would you …

Online Event for Newly Diagnosed FamiliesRead More

World Duchenne Awareness Day – An Open Letter to the Duchenne Community

6 September 2023 by Florence Boulton

World Duchenne Awareness Day - An Open Letter to the Duchenne Community To the International Duchenne Community World Duchenne Awareness Day is …

World Duchenne Awareness Day – An Open Letter to the Duchenne CommunityRead More

DMD Bone Health Information and Sharing Session

28 July 2023 by Lizzie Cox

We are delighted to announce that Action Duchenne, together with MDUK, is co-hosting an event for Duchenne adults and carers. We are …

<strong>DMD Bone Health Information and Sharing Session</strong>Read More

Group Counselling

13 July 2023 by Lizzie Cox

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 …

Group CounsellingRead More

An intervention for parents of boys with DMD is under development, please share your experiences and needs

13 July 2023 by Lizzie Cox

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 …

An intervention for parents of boys with DMD is under development, please share your experiences and needsRead More

Edgewise Therapeutics Announces Positive 12-Month Topline Results From The ARCH Open Label Study Of EDG-5506 In Adults With Becker Muscular Dystrophy (BMD)

11 July 2023 by Mehreen Arif

Edgewise Therapeutics announced today positive 12-month topline results from the ongoing ARCH study, an open label, single-center study assessing the …

Edgewise Therapeutics Announces Positive 12-Month Topline Results From The ARCH Open Label Study Of EDG-5506 In Adults With Becker Muscular Dystrophy (BMD)Read More

Registration is OPEN for the Action Duchenne Annual International Conference 2023

30 June 2023 by Lizzie Cox

Registration is OPEN for the Action Duchenne Annual International Conference 2023 FREE tickets for Duchenne families as well as every young …

<strong>Registration is OPEN for the Action Duchenne Annual International Conference 2023</strong>Read More

Roche UK issues a statement following Sarepta’s Press release regarding ELEVIDYS FDA decision

23 June 2023 by Mehreen Arif

Roche UK issues a statement following Sarepta's Press release regarding ELEVIDYS FDA decision Following the press release from Sarepta released on …

Roche UK issues a statement following Sarepta’s Press release regarding ELEVIDYS FDA decisionRead More

Sarepta Therapeutics Announces FDA Approval of ELEVIDYS, the First Gene Therapy to Treat Duchenne Muscular Dystrophy

23 June 2023 by Mehreen Arif

Sarepta Therapeutics announced U.S. Food and Drug Administration (FDA) accelerated approval of ELEVIDYS (delandistrogene …

Sarepta Therapeutics Announces FDA Approval of ELEVIDYS, the First Gene Therapy to Treat Duchenne Muscular DystrophyRead More

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