Action Duchenne Annual International Conference 2025

Join us at the Action Duchenne Annual International Conference 2025 on the 14th and 15th of November in Hinckley, Leicestershire! 

This event has received financial support from our sponsors. A full list of sponsors can be accessed here. The sponsors have provided funding for this event but have had no involvement or influence in the design, content, speaker selection or delivery of the programme, other than their participation in the Pharmaceutical Q&A Panel session.

With our theme “Empowering Through Education, Fostering Inclusivity and Driving Comprehensive All-Through Support,” Action Duchenne’s 23rd Annual International Conference will provide a one-stop platform to the Duchenne community, bringing together individuals living with Duchenne and their families, patient experts, clinicians, healthcare professionals, pharmaceutical company representatives and equipment providers. It’s an unmissable opportunity to get your questions answered, meet other like-minded people, build a network of friends and feel empowered. With complex science broken down into engaging talks, it will equip you with the relevant tools to thrive at every stage of the Duchenne journey. This year we will provide 6 different streams, hosting 26 sessions, focused on every stage and age of Duchenne muscular dystrophy, across the two days. We are also launching new, exclusive 1:1 sessions with some of our experts, providing the chance for individual guidance and support.

Dive into sessions covering Health and Well-being with experts like Dr. David Schonfeld and Dr. James Poysky, and practical physiotherapy from Nicola Burnett, Jose Longatto and Marion Main. Explore the latest in Science and Research, from early diagnosis and genetics to the clinical landscape of DMD. Learn about Community and Accessibility, including independent living and accessible travel, and stay updated on Developments in Standards of Care, with a focus on bone health, cardiac and respiratory care, and treatment advancements. Gain insights into Adapting to Change through firsthand experiences with housing adaptations and supporting healthy parental relationships. Navigate Inclusion and Equity with discussions on EHCPs, and educational transitions. Don’t miss the invaluable Q&A sessions with clinicians and experts.

For the whole family

We understand the importance of creating a supportive environment for the whole family and that’s why we’re providing dedicated, age-appropriate spaces for all attendees. 

Creche: For children aged 0-6 there is a creche run by a professional team who will take good care of them while you make the most of the conference sessions.  

The Den: With a change for 2025, we’re offering those aged 7-9 their own pre-teen space. They’ll have a similar programme of accessible activities as the older Hang Out area, but with the professional childcare expertise of our creche team. 

The Hang Out: For the older children and young people aged 10-17 can be part of the ‘Hang Out’ with a programme of accessible activities such as music, gaming, Lego building and more.

Time Out

Back by popular demand, the Pit Stop returns as your dedicated space for relaxation and connection. Whether you’re seeking a moment of calm with mindful music, looking to join a support group meeting, needing a confidential conversation with a counsellor, or simply want to indulge in a revitalising hand massage, the PitStop is there to provide comfort and respite throughout the conference. It’s the perfect place to recharge, connect with others, and take a moment for yourself amidst the busy schedule. 

And don’t forget about our legendary Friday Dinner Dance celebration, giving everyone the chance to meet up with friends, let your hair down and have some fun in a room full of people who truly ‘get it’.

Tickets and Registration 

Thanks to the support of our sponsors we can offer FREE tickets to Duchenne families as well as every young person and adult living with Duchenne.  In recognition that many families in the Duchenne community are facing increased cost of living challenges and with the generosity of our Sponsors for the event, we can offer a grant of up to £100 towards your conference travel and/or accommodation to help towards the cost of attending the International Conference. This is one grant per family, and can be claimed after the conference.

Your ticket includes entry to the conference, lunch and refreshments throughout the two days. 

To find out more and book your tickets please visit our registration page. This event has received financial support from our sponsors. A full list of sponsors can be accessed here (Insert link to sponsorship and exhibitor page). The sponsors have provided funding for this event but have had no involvement or influence in the design, content, speaker selection or delivery of the programme”

Webinar Series 2025

While there’s still a little while to go until the conference in November, you can keep up to date on the important topics in Duchenne through our Webinar Series. With subjects ranging from bone health and puberty to positive engagement through technology, our 2025 free webinars aim to address the topics raised by the community, and delivered by leading experts. Visit our webinar home page and find out more!