SAFE AND USEFUL DATA LINKS
OPTIMAL CARE AND PRACTICE
EQUITABLE DATA ACCESS
OUR MISSION, BRINGING DATA TO LIFE TO IMPROVE THE LIFE OF DMD/BMD PATIENTS
We bring together fragmented data pieces of the Duchenne and Becker muscular dystrophy (DMD/BMD) world and test innovative solutions, scaling them to make a global impact. To that end, we coordinate and participate in projects covering multiple areas:
- Patient involvement
- Data ownership
- FAIR data
- Data use and reuse
- Access to data
- Tools for data analysis
- Unifying datasets
- Data collection
WHAT DDF SAYS
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.
Elvina SakellariouOperations Officer and Research Project Manager
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.
Suzie-Ann BakkerProject & Communication Manager
"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.