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  • About Us
    • Our Purpose
    • What We Do
    • Our Impact
    • Our Team
    • Work For Us
    • Volunteer
    • The DMD Registry
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  • Get Support
    • Support Calendar – What’s On
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      • Time Out – A Space for Mums
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    • Highlights from the Action Duchenne Conference 2025
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    • Webinar recordings
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      • Facts about Duchenne muscular dystrophy
      • Signs and Symptoms of Duchenne Muscular Dystrophy
      • Diagnosis of Duchenne Muscular Dystrophy
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      • Genetics – Blueprint of Duchenne Muscular Dystrophy
      • How is Duchenne Muscular Dystrophy Inherited?
    • Hear From Our Community
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    • Upcoming Events and Challenges
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    • Organise your own event
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News

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Welcome to our new Company Secretary

13 December 2019 by Neil

Action Duchenne is delighted to announce the appointment of Victoria Penrice as Company Secretary and trustee. Victoria is joining us at an exciting …

Welcome to our new Company SecretaryRead More

Jonathan raises the profile of Duchenne

13 December 2019 by Lynnette

Our amazing community have really got behind Jonathon Inkin singing his beautiful rendition of Jingle Bells. Jonathon is raising money for Action …

Jonathan raises the profile of DuchenneRead More

Duchenne Patient Academy in Athens

13 December 2019 by Samantha

Last week our Trustee, Gary Fegan, was honoured to join delegates from Duchenne patient organisations from more than 40 countries worldwide …

Duchenne Patient Academy in AthensRead More

Update on UNITE-DMD project

9 December 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

5 December 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

GA Solicitors – Charity of the Year

4 December 2019 by Samantha

We were delighted to be chosen as Charity of the Year by Plymouth law firm GA Solicitors. As part of their fundraising the team organised …

GA Solicitors – Charity of the YearRead More

A message from our Patron, Harry Hill

18 November 2019 by Lynnette

Harry Hill, one of our amazing Patrons, sent us a video which we proudly played at the Gala Dinner on Friday at the Action Duchenne International …

A message from our Patron, Harry HillRead More

An unforgettable weekend at #ADCON19

18 November 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

Solid gene therapy trial placed on hold

12 November 2019 by Neil

Solid BioSciences has announced that the IGNITE DMD trial - a Phase I/II clinical trial of the company’s SGT-001 gene therapy  - has been placed …

Solid gene therapy trial placed on holdRead More

Thank you for helping us build a community

8 November 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

Roche halts development of myostatin inhibitor

6 November 2019 by Neil

Roche have announced the completion of a planned, interim analysis of the data from their trials of their myostatin inhibitor (called RG6206). The …

Roche halts development of myostatin inhibitorRead More

Vamorolone gains Promising Innovative Medicine status

22 October 2019 by Neil

We’re happy to announce that the MHRA (the medicines regulator in the UK) has given Promising Innovative Medicine (or PIM) status to Vamorolone as a …

Vamorolone gains Promising Innovative Medicine statusRead More

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