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  • Challenge 79 for World Duchenne Awareness Day
  • About Us
    • Our vision
    • Our Strategy
    • What we do
    • Our Impact
    • Our team
    • Work For Us
    • Volunteer for us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Mental Health Awareness Week 2025
    • Science on Tour
    • 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
    • SAVE THE DATE for the 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
    • Help Make a Life Beyond Duchenne Possible – Every Month
    • Fundraising Events and Challenges
    • Take on a challenge for Duchenne
    • Shop

Action Duchenne

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An amazing 10 in 10 for Action Duchenne

May 19, 2021 by Victoria Young

For the last 10 days Samantha Lews has run 10km every day! Her reason for running is her friends son Lewis, who is 13 and lives with Duchenne …

An amazing 10 in 10 for Action DuchenneRead More

Golodirsen gains conditional approval in US

December 16, 2019 by Neil

Sarepta Therapeutics has announced that the FDA (the medicines regular in the US) has granted accelerated approval to golodirsen.  Golodirsen, or …

Golodirsen gains conditional approval in USRead More

Update on UNITE-DMD project

December 9, 2019 by Neil

The UNITE-DMD project, which we are co-funding alongside Muscular Dystrophy UK and AFM-Téléthon brings together several strands of research to …

Update on UNITE-DMD projectRead More

Duchenne Science events back on the road in 2020

December 5, 2019 by Lynnette

We've welcomed over 100 people to our Science on Tour events throughout 2019, these empowering and invaluable sessions have been a huge success and we …

Duchenne Science events back on the road in 2020Read More

An unforgettable weekend at #ADCON19

November 18, 2019 by Lynnette

Thank you to each and every person who attended the Action Duchenne International Conference 2019. We have all had such a wonderful weekend with …

An unforgettable weekend at #ADCON19Read More

Thank you for helping us build a community

November 8, 2019 by Lynnette

Wow, we've had a busy few weeks here at AD HQ, delivering one of our 3 key objectives of 'building a community'. Our team have barely touched the …

Thank you for helping us build a communityRead More

Patron wows audiences with moving X Factor performance

October 17, 2019 by Lynnette

We were captivated by our Patron, Martin Bashir's beautiful show stopping performance of Nat King Cole's L-O-V-E on this weekend's The Celebrity …

Patron wows audiences with moving X Factor performanceRead More

Patron Martin Bashir to feature in Celebrity X Factor

October 9, 2019 by Lynnette

We are excited to share with you that our Patron, Martin Bashir, is featuring in the forthcoming Celebrity X Factor series in the 'OVERS' …

Patron Martin Bashir to feature in Celebrity X FactorRead More

Cross Party Group meeting on Rare, Genetic and Undiagnosed Conditions

October 4, 2019 by Samantha

Last week Action Duchenne attended a meeting of the Cross Party Group on Rare, Genetic and Undiagnosed Conditions at the Scottish Parliament. The …

Cross Party Group meeting on Rare, Genetic and Undiagnosed ConditionsRead More

Accident and Emergency Admissions

October 4, 2019 by Samantha

Simon and Shelley had a very productive meeting with the NHS Digital team last week who lead on data gathering and analysis. This forms a key part of …

Accident and Emergency AdmissionsRead More

Where’s my chair?

October 3, 2019 by Samantha

Action Duchenne’s Where’s my chair? campaign set out to achieve full wheelchair access for people living with Duchenne. We had a fantastic …

Where’s my chair?Read 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

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