Highlights from the Action Duchenne Conference 2025
The Action Duchenne Annual International Conference 2025 took place on Friday 14th and Saturday 15th of November and brought individuals living with Duchenne and their families, patient experts, clinicians, healthcare professionals, pharmaceutical company representatives and equipment providers. This year, we had 6 content streams running over the two days, hosting a total of 26 different sessions focused on every stage and age of Duchenne muscular dystrophy. With a variety of presentations, interactive sessions as well as peer-led discussion, it was an unmissable opportunity to get your questions answered, meet other like-minded people, build a network of friends and feel empowered.
With Storm Claudia causing travel troubles up and down the country, we were so pleased that a total of 317 people battled the elements to join us. With 133 family registrants and 69 children and young people in attendance, it truly was a chance for our community to connect, share experiences and learn from each other.
“We all had a fantastic time at the Action Duchenne conference. It was great meeting other families and being able to attend invaluable talks. The time spent relaxing whilst we knew our son was being cared for and having a great time was incredibly beneficial for our wellbeing too.” Duchenne parent and Conference Attendee.
As well as our content streams, we were excited to launch our new, exclusive 1:1 sessions with some of our experts, providing families with the opportunity for individual support and guidance in a confidential space. Our Pit Stop area returned for a second year, creating a safe and supportive space for parents and carers to have some time out. With counsellors and care advisors, mindful music and a massage therapist offering hand massages as well as our support team on hand, the Pit Stop offered a chance for sharing the emotional load or simply some quiet time to reflect.
While parents attended sessions, our professional creche staff ran activities for children and our Den and Hang Out spaces gave those living with Duchenne and their siblings a unique opportunity to connect and develop friendships. We were delighted to be joined by MindJam and Rokzkool Academy who provided gaming and music workshops for the two days, alongside our usual lego and craft activities.
There were many highlights over the two days; from the awards ceremony honouring those who have gone above and beyond to support our work this year, to the dinner dance on Friday evening which brings us all together on the dance floor. We were honoured to welcome our charity patron, Harry Hill, on Saturday afternoon and many of our children and young people enjoyed showing him around before he brought our 2025 event to a close.
“Thank you so much for a great conference, I can’t describe how much it means to us to be able to spend time with others who ‘get it. Already can’t wait for next year!” Duchenne parent and Conference Attendee.
We want to thank our sponsors, speakers, volunteers, exhibitors and everyone who attended our conference, making it an amazing two days of learning, connection and support which truly celebrated the strength of our community.
Please remember that we are here for you wherever you are in your journey. Find out more about how we can support you and your family, or get in touch with us on info@actionduchenne.org and we’ll get back to you.
*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.
