Amsterdam February 28, 2023 - We are thrilled to announce the documentary Help Has No Borders as part of the DMD Emergency program...
Amsterdam, 17 February 2023 – We are thrilled to announce that the applications for Duchenne Centers Accreditation are now open...
December 8, 2022 – Duchenne Patient Academy successfully concludes 2022 edition. The World Duchenne Organization and Duchenne Da...
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.
"Making a difference" is my motivation ever since my own son was diagnosed with Duchenne in 1993. As Duchenne CAB Coordinator, my role is to connect the right people, patient representatives and companies, to make a difference in research and development, to optimize clinical trials and equitable access to trials and treatments.