On December 2025, 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.”
The World Duchenne Organization and the Duchenne Data Foundation are proud to announce the successful conclusion of the Duchenne P...
At this year’s Duchenne Patient Academy, the Chairman of the DDF Board, George Paliouras, was invited to speak about a topic tha...
We are excited to announce the 2025 edition of the Duchenne Patient Academy, which will be held fully online on Saturday 13 Decemb...
Duchenne Data Foundation is a powerful reality where data and information are shared and used to make a difference for the benefit of the global Duchenne community.
I have always wanted to work with data for the benefit of the world. Duchenne Data Foundation is the place where information and technology meet to enable the future that we are looking for.
I often imagine how the life of boys with DMD would be if data was widely available for research, therapy development and standards of care. Through DDF, I hope to make this dream a reality
Always considered myself as a Patient Advocate through my research in rare diseases, aiming at discovering the unknown and being one step closer to the cure. It was not so evident until I joined DDF that working on my own niche I was also contributing to data siloing. Here I stand to raise awareness on the importance of open data and data sharing and participate in initiatives to promote the discovery and (re)use of DMD data.
Data is so much more than numbers and figures. Data can be transformed into actionable knowledge, and we need the global Duchenne community to determine what is useful and valuable for them.