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Fundraising total announced for GP’s epic 362 mile run

January 20, 2022 by Lynnette

This week, Duchenne family and long-standing Action Duchenne supporters, the O'Doherty's of Derry, Ireland announced they have raised an incredible …

Fundraising total announced for GP’s epic 362 mile runRead More

Farewell 2021, welcome 2022

January 14, 2022 by Lynnette

A message from our National Director, Florence Boulton Another year has flown by! A very Happy New Year to all my colleagues, partners, families …

Farewell 2021, welcome 2022Read More

Long-standing Trustee launches charity album

January 14, 2022 by Lynnette

ACTION Duchenne’s longest-serving Trustee, Mark Silverman, has today launched his lock-down inspired album ‘Markin’ Time’.  Taking vocals for …

Long-standing Trustee launches charity albumRead More

Charity album coming soon

January 7, 2022 by Victoria Edwards

We are so excited to announce the launch of Markin' Time, Mark Silverman's debut solo album! In 2020 during the first lockdown, our Trustee Mark …

Charity album coming soonRead More

Innovative and sustainable FAIR solution for Duchenne Data Platform

January 4, 2022 by Lynnette

Duchenne Parent Project in the Netherlands announced that their patient-led online registry (The Duchenne Data Platform) has successfully …

Innovative and sustainable FAIR solution for Duchenne Data PlatformRead More

Book giveaway for newly diagnosed families

December 8, 2021 by Victoria Edwards

Thanks to the amazing Gemma Kier, author of The Abilities in Me Children's Book Series, we are delighted to be able to send this amazing book out to …

Book giveaway for newly diagnosed familiesRead More

Dyne Therapeutics announce application to start exon 51 skipping clinical trial

December 7, 2021 by Lynnette

Dyne Therapeutics, Inc. announced on 2nd December 2021 the submission of an Investigational New Drug (IND) application to the U.S. Food and Drug …

Dyne Therapeutics announce application to start exon 51 skipping clinical trialRead More

Santhera and ReveraGen announce positive topline results with Vamorolone after completion of the Vision_DMD Study

November 24, 2021 by Lynnette

Action Duchenne is pleased to share the announcement from Santhera Pharmaceuticals and ReveraGen BioPharma, Inc., of new results after completion of …

Santhera and ReveraGen announce positive topline results with Vamorolone after completion of the Vision_DMD StudyRead More

International Conference and community

November 19, 2021 by Lizzie Cox

Blog by Florence Boulton, National Director - written in Cambridge just after we finished delivering the Action Duchenne International Conference …

International Conference and communityRead More

World Toilet Day 2021

November 18, 2021 by Lynnette

Who cares about toilets? 3.6 billion people do. Because they don’t have one. Today, nearly half the world’s population live without a 'safely …

World Toilet Day 2021Read More

Action Duchenne International Conference embodies powerful Duchenne community

November 16, 2021 by Lynnette

OVER the weekend of 13 and 14 November 2021, Action Duchenne welcomed families, researchers, clinicians and pharmaceutical companies from across the …

Action Duchenne International Conference embodies powerful Duchenne communityRead More

Conference agenda, brochure and joining instructions

November 4, 2021 by Lynnette

We are looking forward to welcoming you to this year's Conference. Flexibility The flexibility of the online platform means you can dip into …

Conference agenda, brochure and joining instructionsRead More

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