Welcome to the Action Duchenne Community Summit 2026!
This year marks a meaningful step forward. Formerly known as the International Conference, the newly named Community Summit reflects who we truly are: a community first organisation built on shared learning, trusted connections and journeying side by side with families. At this event, we come together to listen, learn and grow.
We are proud to host this year’s Community Summit at Burleigh Court, Loughborough University, a leading hub for accessible and inclusive sport. It is a setting shaped by world-class expertise in movement, rehabilitation and adaptive sport, making it uniquely positioned to hold this important event for the Duchenne community.
THE BURLEIGH COURT CONFERENCE CENTRE
Following considerable feedback from the community we have changed the venue this year to Burleigh Court Conference Centre and Hotel, Loughborough.
The hotel is one of only 9 in the UK to have the Mobility 3 accreditation – meaning that it is one of the most accessible hotel venues in the country. In fact the British Paralympic Association are regular visitors stating:
“Over several years, the British Paralympic Association have hosted a range of events and conferences of different scales at Burleigh Court, attended by delegates and guests with varying impairments and accessibility requirements. Most recently, you hosted our Paris 2024 Team Development programme in May 2023, where we had over 120 team members attending and staying at the hotel, including a number of wheelchair users. We have always found Burleigh Court and the team there to be very accommodating and willing to make reasonable adjustments and adaptations in order to meet the support needs of our guests”
Before we booked with the venue we wanted to see it for ourselves and whilst we were there our CEO Katie filmed a short tour to give you a flavour of what to expect. The hotel also has a virtual tour which you might like to watch: Virtual tour – Burleigh Court and you may wish to view their accessibility guide: Accessibility guide – Burleigh Court
BOOKING YOUR HOTEL ROOM
We are pleased to inform you that there is a 15% discount for those attending the Community Summit
If you need an accessible room and/or equipment:
These are available and the hotel will be able to help. Please email them directly using the email address: beds@lboro.ac.uk using the code Duchenne15 as the email subject and inform them of exactly what you need. When you fill in the registration form for the Community Summit, we will also ask you for exactly what equipment you need for your stay and have regular meetings with the hotel team to ensure that if they don’t have a particular piece of equipment then we can provide one.
If you don’t need an accessible room:
You can book your hotel room using the hotel website (it is more expensive if you book via third party websites). Please use the code Duchenne15 when prompted to apply the discount.
Grant
We are very aware that the cost of living is making everything more expensive and as such to ensure that we can keep the Community Summit accessible to all we have increased our grant from £100 to £175 per family which you will be able to claim back after the event. Please contact us if you have any concerns about the cost before the event.
Please note that lunch on both the Friday and the Saturday plus refreshments (pastries/snacks/drinks) throughout the days will be provided, with only the Dinner Dance event having an additional cost (booked through our registration form)for those who wish to join us. We are extremely grateful to our sponsors for supporting the cost of the Community Summit, with both pool and gym use also included as well as childcare throughout both days.
Directions:
The hotel and conference centre is easily accessible, with full details of how on their website.
Quality of Life: Powered by Knowledge, Community and Care
This theme for our 2026 event sits at the heart of everything we are building It captures what matters most: helping individuals with Duchenne and their families live fuller lives, feel supported and face the future with clarity and confidence. Every session, every conversation and every connection will be shaped by this purpose, turning knowledge into action, care into impact and community into strength.
“Meeting other families, sharing experiences, laughing, crying, learning together, that’s the heart of the conference. There’s something incredibly comforting about being surrounded by people who understand without needing words. A simple nod, a knowing smile, an encouraging “you’ve got this” – those moments mean everything.” Previous Event Attendees.
What We’re Bringing Back
Rest assured that our new-look 2026 event comes with the same focus on community, shared experience and connection. In fact, we hope that it will give you even more opportunity to feel supported and understood, wherever you are on your journey.
- 3 simultaneous content streams covering every aspect of day-to-day life with Duchenne.
- Our Pit Stop area, a safe space for parents and carers to focus on their wellbeing, have a chat with our support team or just have a moment of quiet.
- Dedicated childcare spaces with activities designed to be accessible, inclusive and fun for children and young people of all ages.
- Our traditional Friday evening dinner-dance
- 1-1 sessions with some of our experts
- FREE conference tickets for Duchenne families and anyone living with Duchenne
The community summit is more than an event: it is a space to belong, to be heard and to shape a better future together. Make sure you’ve signed up to receive our monthly newsletter for more details of our agenda, speakers and sessions!
We can’t wait to welcome you to the Action Duchenne Community Summit 2026.
