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Action Duchenne

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  • Donate
  • About Us
    • Celebrating 25 Years of Action Duchenne
    • Our Purpose
    • What We Do
    • Our Impact
    • Our Team
    • Work For Us
    • Volunteer
    • The DMD Registry
    • Action Duchenne Policies
  • Get Support
    • Register for Support
      • Time Out – A Space for Mums
      • Dads Against Duchenne
      • Grandparents Together
    • Recently diagnosed
    • Children and Young People
    • Schools
    • End of Life and Bereavement
  • Community Summit
    • Action Duchenne Community Summit 2026 (Previously International Conference)
    • Community Summit 2026 Agenda and Sponsors
    • 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
  • Support Us
    • Friends of Action Duchenne
    • Side by Side: Running Together for Action Duchenne – Your Invitation
    • Upcoming Events and Challenges
    • Give in memory and help us support every family, every time.
    • Organise your own event
    • Fundraising at school
    • Donate by cheque and post
    • Welcome to our Runner Hub

Duchenne 101 Online

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Duchenne 101 Online

Our Duchenne 101 virtual event will be held on Saturday the 28th of September from 2 – 5pm and we would love for you to join us. 

REGISTER NOW

This year we have 6 sessions covering the medical, psychological and social aspects of living with Duchenne and what we can do to get the best outcome for everyone living with Duchenne. 

Sessions are: 

  • Dystrophin in the Body
  • Treatments (Current and future) 
  • A Q + A sessions with Ravi, a 36 year old living and achieving with Duchenne 
  • Coming to terms with Duchenne 
  • Protecting the wellbeing of you and your child 
  • Accessing the world around you 

We believe that these subjects are always relevant when it comes to Duchenne, not only when you are newly diagnosed. It is often when we feel most at home with Duchenne that it decides to throw another problem our way. We want to arm you with the knowledge and the information of what to do, where to go and who to speak to make sure you and your family get the support or help you deserve. 

Alex tells you all about Duchenne 101 Online.

There will be breaks built into the afternoon as well as opportunities to discuss and ask AD staff and the community your questions. Often Duchenne can make us feel so isolated from each other, days like this can really remind us that there is a strong community of families experiencing Duchenne and we are stronger together.

REGISTER

It is a virtual event and we have done this to make it easier for those in remote and International communities to join as well as those of us that struggle to commute or access in person events. 
The day will be run and hosted by Alex from the team and if you have any questions at all about the day or want any further information please contact him at alex@actionduchenne.org or call/ text him on 07939973981. We look forward to seeing as many of you there as possible.

Have you booked tickets for our in-person conference yet?

REGISTER

Join the Duchenne community at Action Duchenne’s Annual International Conference 2024

Friday 8th – Saturday 9th November 2024

Leonardo Hotel Hinckley Island, Leicestershire, LE10 3JA

Our 22nd Annual International Conference will bring together families, clinicians, therapists, researchers, and pharmaceutical companies from across the world to support, empower and share knowledge. 

The theme for this year’s conference is ‘Educating, Connecting and Wellbeing’ with 3 simultaneous content streams over 2 days, covering key areas on Duchenne muscular dystrophy, enabling you and your family to discover the latest Duchenne science from the experts, build your support network and make time to focus on your mental and physical wellbeing. Come along with your family – Action Duchenne is delighted to offer our Hang Out area for teens, and we welcome the return of our free creche for under 9’s to allow parents/carers to attend conference sessions. Join us on Friday evening for a 3-course meal and dance celebration to make it an unforgettable weekend.

Thanks to the generous support from our Sponsors, tickets are FREE for Duchenne families and anyone living with Duchenne. We are also offering families a grant of up to £100 towards their conference travel and/or accommodation. 

Find out more

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