Successful conclusion of Duchenne Patient Academy 2025

The World Duchenne Organization and the Duchenne Data Foundation are proud to announce the successful conclusion of the Duchenne Patient Academy (DPA) 2025, an online educational training held in December 2025. This year’s edition brought together more than 400 participants from all around the world, united by a shared commitment to strengthen patient advocacy, improving standards of care, and advancing research for Duchenne and Becker muscular dystrophy (DMD and BMD).

Patient advocates, community leaders, healthcare professionals, researchers, and industry representatives joined this interactive online program, designed to educate participants with knowledge and skills to make an impact in their local and global Duchenne communities.

Day 1: Advocacy, Care, and Drug Development

The Academy opened with a warm welcome by Elizabeth Vroom, chair of WDO, setting the tone for two days of engagement and shared purpose. The first sessions focused on advocacy and care, with presentations on:

The role of advocacy by patient organizations (Elizabeth Vroom)
Standards of Care and care guidelines (Dr Karolína Podolská)
Drug development in the Duchenne field (Prof. Annemieke Aartsma-Rus)

An interactive Q&A session, moderated by Dr Karolína Podolská, allowed participants to deepen their understanding and connect the topics directly to real-world advocacy challenges.

The afternoon featured various company updates by prof Eugenio Mercuri introduced and moderated by Dr Karolína Podolská. Pharmaceutical representatives from across the Duchenne landscape shared updates on programs, research, and collaborations, followed by a moderated Q&A.

Day 2: Community, Networking, and Empowerment

Day two of this educational program opened with a welcome by Nicoletta Madia with a strong focus on community building. Sessions explored how to strengthen and grow patient communities, including practical guidance on how to start a patient organization, presented by Nana Zomen from Seven Seas Japan.

The network building segment emphasized the importance of collaboration and inclusion:

Advocacy as a collective effort (Elizabeth Vroom)
Involving young people in drug development (Dr Anneliene Jonker)
The value of networking and cross-border cooperation (Dimitrios Athanasiou)

The empowerment sessions highlighted critical pillars of sustainable advocacy:

The importance of patient data (George Paliouras)
The value of Accredited Duchenne Care Centers for patients and families (İlker Karci)
A moving reflection on thirty years of hope in the Duchenne community (Pat Furlong)

The Academy concluded with final take-home messages and reflections, as well as a look ahead. Participants were also reminded that the next edition of the Duchenne Care Conference will take place virtually on May 26 and 27, 2026, continuing the shared mission of advancing care for DMD and BMD.

Resources

During the presentations the speakers referred to the following information online available:

Research overview and therapeutic pipeline in Duchenne muscular dystrophy
The Accredited Duchenne Care Centers Program,
Correct wheelchair seating by Prof. Imelda de Groot
The safe use of nutritional supplements in Duchenne, supported by scientific evidence and a lay summary,
The importance of newborn screening for Duchenne,
Meaningful involvement of young people in advocacy and drug development,
Tools such as the Duchenne Map to support access to care worldwide,

In conclusion

Duchenne Patient Academy 2025 successfully equipped participants with knowledge, confidence, and connections to further strengthen advocacy efforts for Duchenne and Becker muscular dystrophy.

We look forward to continuing this collaboration and building on the momentum created, together working toward better care, access, and outcomes for all people living with DMD and BMD.