Data for Cure and Care
A collective initiative
to promote understanding
Duchenne Data Foundation is a worldwide collaboration in order to enhance the understanding of the course of Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD), the effects of treatments, the needs and preferences of DMD/BMD patients and all other aspects relevant to the lives of DMD/BMD patients.
Mirjam Franken-Verbeek, Ir
Founder & Board member
Mirjam is a mother of a 20-year old son, Ralph, with DMD. She has a background in Human Nutrition at the Wageningen University. Shortly after the diagnosis of Ralph’s disease in 2002, Mirjam engaged in voluntary work for Duchenne Parent Project the Netherlands (DPP). Since 2006 she was involved as a board member of DPP Netherlands. Since 2015 she works as a project manager for this foundation.
Georgios Paliouras, PhD
Father of a boy with Duchenne Muscular Dystrophy. Computer Science researcher at NCSR “Demokritos”, Greece. Research areas: Artificial Intelligence, Machine Learning, Data Analytics, Precision Medicine.
Ryan has been working in the Duchenne field for over 15 years. He is the Sr. Vice President of Community Engagement at Parent Project Muscular Dystrophy, and has expertise in the global Duchenne field about grassroots outreach, social science work, and patient-focused drug development. He is also involved in the Duchenne Registry.
Duchenne CAB Coordinator
Mother of an adult with Duchenne. Coordinator of the Duchenne Community Advisory Board (CAB). In here, she facilitates discussions in a neutral setting on the latest developments and challenges related to medical research and procedures with companies and research bodies.
Elvina Sakellariou, PhD
Project manager of Duchenne Data Foundation. Researcher in the field of biomedical data.
Developing and carrying out community building activities with various groups across the world. Initiator and project manager of Social Duchenne.
Developing and carrying out communication activities for the global Duchenne and Becker community. This includes the design and management international workshops and conferences, webinars, and press and (social) media coverage.