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    • Volunteer
    • The DMD Registry
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  • Get Support
    • Register for Support
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Online Group Counselling Programme
    • Recently diagnosed
    • Children and Young People
    • Summer 2026 In-Person Family Days
    • Schools
    • End of Life and Bereavement
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    • Action Duchenne Community Summit 2026 (Previously International Conference)
    • Highlights from the Action Duchenne Conference 2025
  • News, Webinars and Blogs
    • News
    • Webinar Series 2026
    • Webinar recordings
    • Bite-Sized Duchenne Science Live
      • Facts about Duchenne muscular dystrophy
      • Signs and Symptoms of Duchenne Muscular Dystrophy
      • Diagnosis of Duchenne Muscular Dystrophy
      • Crucial Genetic Terminology
      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
    • Hear From Our Community
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    • Friends of Action Duchenne
    • Upcoming Events and Challenges
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    • Organise your own event
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    • Donate by cheque and post
    • Welcome to our Runner Hub

News

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Action Duchenne skydive 2018 was amazing

10 July 2018 by abzali123

A huge THANK YOU to the 12 amazing fundraisers who jumped out of planes across the country for Duchenne muscular dystrophy this weekend! YouTube …

Action Duchenne skydive 2018 was amazingRead More

Cambridgeshire Dad pushes himself to the limit

5 July 2018 by abzali123

A huge thank you and well done to the incredible Alexis Ellison who completed his 24 hour mammoth bike ride - cycling the 9 mile road back …

Cambridgeshire Dad pushes himself to the limitRead More

Summit announces results of PhaseOut DMD clinical trial of Ezutromid

27 June 2018 by abzali123

Earlier today Summit Therapeutics announced the results of the PhaseOut DMD clinical trial of Ezutromid. Although Ezutromid was safe and well …

Summit announces results of PhaseOut DMD clinical trial of EzutromidRead More

ReveraGen BioPharma announces preliminary results of Vamorolone trial

26 June 2018 by abzali123

ReveraGen BioPharma has announced encouraging preliminary results of their early stage clinical trial of Vamorolone, a potential drug that researchers …

ReveraGen BioPharma announces preliminary results of Vamorolone trialRead More

HELLO FROM YOUR NEW ACTION DUCHENNE TEAM!

25 June 2018 by abzali123

We would like to start the week by saying hello and introducing ourselves as your new Action Duchenne team! We are dedicated in delivering our vision …

HELLO FROM YOUR NEW ACTION DUCHENNE TEAM!Read More

Santhera announces renewal of Raxone EAMS

22 June 2018 by abzali123

Santhera has announced that the MHRA (the UK’s drug and medicines regulator) has granted a renewal of the Early Access to Medicines Scheme scientific …

Santhera announces renewal of Raxone EAMSRead More

CEO attends EURORDIS Summer School

20 June 2018 by abzali123

Last week our incoming CEO, Shelley Simmonds, completed a 5 day intensive training programme in Barcelona, having been selected to take part in the …

CEO attends EURORDIS Summer SchoolRead More

Sarepta announce early, preliminary gene therapy trial results

20 June 2018 by abzali123

Sarepta therapeutics has announced preliminary results of a gene therapy trial that is using a harmless virus to deliver a small but functional …

Sarepta announce early, preliminary gene therapy trial resultsRead More

DMD Pathfinders launch new nutrition guide for adults

18 June 2018 by abzali123

DMD Pathfinders have worked with global health professionals to create a guide which provides information on nutrition for adults with Duchenne. They …

DMD Pathfinders launch new nutrition guide for adultsRead More

Solid Biosciences announce FDA have removed clinical hold from their gene therapy trial

18 June 2018 by abzali123

Solid Biosciences have announced that the FDA has given approval for the company to restart the phase I/II IGNITE DMD clinical trial. The clinical …

Solid Biosciences announce FDA have removed clinical hold from their gene therapy trialRead More

Career Legal Bake Off is a great success!

11 June 2018 by abzali123

Thank you to the wonderful Abbie Smith and Michelle McDermott of Career Legal for organising the fantastic Bake Off on Friday 8 June for Action …

Career Legal Bake Off is a great success!Read More

New technology could highlight potential treatments for Duchenne muscular dystrophy

8 June 2018 by abzali123

Researchers from Queen Mary University of London have developed new cell-based technologies which could improve understanding of the muscle-wasting …

New technology could highlight potential treatments for Duchenne muscular dystrophyRead More

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