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  • Challenge 79
  • About Us
    • Our vision
    • Our Strategy
    • What we do
    • Our Impact
    • Our team
    • Work For Us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Support Calendar – What’s On
    • Support for you and your family
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
      • Open Space
      • Group Counselling Programme
    • Recently diagnosed
    • Connect with others
    • Support for 8-14 yrs ‘Turning Point’
    • Support for 14-25 yrs ‘Yes I Can’
    • Schools
    • Siblings
    • End of Life and Bereavement
  • AD Annual International Conference
    • Action Duchenne Annual International Conference 2025
    • Highlights from the Annual Action Duchenne Annual International 2024
    • Annual International Conference 2023 Video Recordings
    • Annual International Conference 2022 Recordings
      • Adults with Duchenne
      • Growing up with Duchenne
      • The Duchenne Journey
      • What is new in Duchenne research?
  • News, Webinars and Blogs
    • News
    • Webinar Series 2025
      • Webinar Series 2025
      • 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?
    • Blogs
  • Support Us
    • World Duchenne Awareness Day 2025
    • Help Make a Life Beyond Duchenne Possible – Every Month
    • Fundraising Events and Challenges
    • Take on a challenge for Duchenne
    • Shop

News

You are here: Home / News

CEO’s Message: Welcoming New Trustees and Farewell to Victoria Penrice

July 10, 2024 by Lizzie Cox

CEO's Message: Welcoming New Trustees and Farewell to Victoria Penrice Action Duchenne is delighted to announce the appointment of three …

CEO’s Message: Welcoming New Trustees and Farewell to Victoria PenriceRead More

Submit Your Questions to be Answered by Pharmaceutical Companies

July 9, 2024 by John Marrin

…

Submit Your Questions to be Answered by Pharmaceutical CompaniesRead More

Yes I Can In-Person Meet-Up at Think Tank, Birmingham

July 6, 2024 by Lizzie Cox

Yes I Can In-Person Meet-Up at Think Tank, Birmingham We are planning an in-person meet-up at Think Tank, the Science Museum in Birmingham. As …

Yes I Can In-Person Meet-Up at Think Tank, BirminghamRead More

The Committee for Medicinal Products for Human Use (CHMP) Issues Negative Opinion on Translarna™ Following European Commission Request for Review

July 5, 2024 by John Marrin

PTC Therapeutics has announced that the European Medicine Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) issued a negative …

The Committee for Medicinal Products for Human Use (CHMP) Issues Negative Opinion on Translarna™ Following European Commission Request for ReviewRead More

Turning Point Families Day at Thomley

July 3, 2024 by Victoria Edwards

Turning Point Families Day at Thomley On Saturday 22nd June Dougie and I met up with other families at Thomley for the TurningPoint families …

Turning Point Families Day at ThomleyRead More

A day to remember for Duchenne families with Alder Hey Children’s Hospital

July 2, 2024 by DawnAD

On Thursday May 30th, we supported Alder Hey Children's Hospital hosting a special event for families affected by Duchenne muscular dystrophy (DMD). …

A day to remember for Duchenne families with Alder Hey Children’s HospitalRead More

Entrada Therapeutics Reports Positive Preliminary Data in Healthy Volunteers from Phase 1 ENTR-601-44-101 Trial for Duchenne Muscular Dystrophy

June 28, 2024 by John Marrin

Entrada Therapeutics, a company developing treatments for rare diseases, reports encouraging preliminary data from a Phase 1 clinical trial …

Entrada Therapeutics Reports Positive Preliminary Data in Healthy Volunteers from Phase 1 ENTR-601-44-101 Trial for Duchenne Muscular DystrophyRead More

Action Duchenne’s Science on Tour Team visit Ashford School

June 28, 2024 by Lizzie Cox

Action Duchenne Science on Tour Team visit Ashford School A new addition to this years’ Science on Tour is our school visits, part of our ongoing …

Action Duchenne’s Science on Tour Team visit Ashford SchoolRead More

Make a Difference – Join Our Charity Running Events!

June 28, 2024 by Lizzie Cox

 Are your employees ready to lace up their running shoes and support a great cause? 🌟  We invite your team to join us at one of our upcoming …

Make a Difference – Join Our Charity Running Events!Read More

Do you live in Scotland or Wales? Join our Focus Groups to tell us what support YOU need!

June 26, 2024 by Lizzie Cox

Do you live in Scotland or Wales? Join our Focus Groups to tell us what support YOU need! Improving the lives of everyone that lives with DMD is …

Do you live in Scotland or Wales? Join our Focus Groups to tell us what support YOU need!Read More

Sarepta Therapeutics Announces Positive Update on ELEVIDYS (delandistrogene moxeparvovec-rokl) Regulatory Progress for Duchenne Muscular Dystrophy (DMD)

June 21, 2024 by John Marrin

Sarepta Therapeutics, Inc. today provided an update on the regulatory progress of ELEVIDYS (delandistrogene moxeparvovec-rokl), its gene therapy for …

Sarepta Therapeutics Announces Positive Update on ELEVIDYS (delandistrogene moxeparvovec-rokl) Regulatory Progress for Duchenne Muscular Dystrophy (DMD)Read More

Start your Summer as an AD Champion at the Parellel Windsor Festival of Inclusivity

June 9, 2024 by Lizzie Cox

Start your Summer as an Action Duchenne Champion Action Duchenne are proud to be a Parallel charity partner for their flagship Festival of …

Start your Summer as an AD Champion at the Parellel Windsor Festival of InclusivityRead More

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