At this year’s Duchenne Patient Academy, the Chairman of the DDF Board, George Paliouras, was invited to speak about a topic that sits at the heart of our mission: “Why data are important to patients and patient organizations.”
In his talk, George walks through the two “dragons” that every family meets the moment a Duchenne Muscular Dystrophy (DMD) diagnosis arrives:
The Care Dragon – How do we navigate day-to-day care, multidisciplinary teams, access to services and standards of care?
The Cure Dragon – How do we think about trials, research, new therapies, and long-term hope?
Each “dragon” requires different decisions, timelines, and kinds of strength. Data – when collected, governed and used responsibly – can help families, clinicians and advocates make better choices on both paths.
The presentation also highlights the global initiatives shaping today’s DMD data landscape and showcases the Duchenne Data Foundation’s two flagship projects:
Duchenne Map – a powerful tool to navigate care pathways and expertise around the world.
Duchenne Data Repository – a cornerstone for responsible, community-driven research.
As you watch the talk, we invite you to reflect on how these tools can support your journey – as a parent, person living with DMD/BMD, clinician, researcher, or advocate, and to join us by:
âś… using them in your daily work,
âś… sharing them with your communities,
âś… helping spread high-quality, trustworthy information across the Duchenne ecosystem.
🔗 Watch the full presentation here 👇
