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.