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    • Action Duchenne Annual International Conference 2025
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    • Webinar recordings
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      • Diagnosis of Duchenne Muscular Dystrophy
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      • How is Duchenne Muscular Dystrophy Inherited?
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News

You are here: Home / News

Information about Translarna MAA

September 25, 2019 by Neil

We’re working with Muscular Dystrophy UK to make sure that emerging treatments for Duchenne get to those who need them, as quickly as possible. Since …

Information about Translarna MAARead More

Wave gives suvodirsen update

September 19, 2019 by Neil

Wave Life Sciences announced earlier this week that Suvodirsen has been granted fast track approval by the Federal Drug Administration (the drug …

Wave gives suvodirsen updateRead More

Statement from the Board of Trustees

September 11, 2019 by Lynnette

Action Duchenne does not routinely reply directly to comments on social media. However, given the understandable interest of the community following a …

Statement from the Board of TrusteesRead More

Duchenne Standards of Care: Psychosocial

September 9, 2019 by Lynnette

At the Action Duchenne International Conference in 2018, experts from across the world gave talks on topics around the current Standards of Care for …

Duchenne Standards of Care: PsychosocialRead More

Duchenne Standards of Care: Transition

September 9, 2019 by Lynnette

At the Action Duchenne International Conference in 2018, experts from across the world gave talks on topics around the current Standards of Care for …

Duchenne Standards of Care: TransitionRead More

World Duchenne Awareness Day

September 6, 2019 by Lynnette

Our Patron, Harry Hill and Ambassador, Jonny Gould share their messages on World Duchenne Awareness Day. …

World Duchenne Awareness DayRead More

Highlighting the importance of treatments for all

September 6, 2019 by Lynnette

We recently wrote to the Medicines and Healthcare Products Regulatory Agency (MHRA) - the UK drug regulator - to highlight the importance of …

Highlighting the importance of treatments for allRead More

Vamorolone trial results published

August 29, 2019 by Neil

Earlier this week the results of an early trial of vamorolone in boys with Duchenne have been published in the Neurology scientific journal. …

Vamorolone trial results publishedRead More

Ignite DMD update

August 16, 2019 by Neil

In a press release yesterday, Solid Biosciences gave a short update on their gene therapy trial called Ignite DMD. Following the decision earlier this …

Ignite DMD updateRead More

Sarepta issues clinical trials update

August 9, 2019 by Neil

In recent press releases, Sarepta Therapeutics has given updates on their ongoing clinical trial programmes. These include exon skipping and gene …

Sarepta issues clinical trials updateRead More

3 months until the Action Duchenne International Conference 2019

August 8, 2019 by Lynnette

We are super excited here at AD HQ that there are only 3 short months to go before #ADConf19! We will begin to announce our speakers tomorrow who will …

3 months until the Action Duchenne International Conference 2019Read More

Online learning tool for kids

August 5, 2019 by Lynnette

We have teamed up with Purple Mash to offer you access to a fantastic online learning tool for primary-aged kids (under 12). Your children log in …

Online learning tool for kidsRead More

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