The Duchenne Data Foundation board consists of experts in the field of Duchenne muscular dystrophy, data collection and analysis, regulations and policy.
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). In 2015 she founded Duchenne Data Foundation, where she is also a board member.
George 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.
Project & Communication Manager
Developing and managing Duchenne Patient Academy. Facilitate on-boarding and population of data in Duchenne Map.
Duchenne CAB Coordinator
Mother of an adult with Duchenne. Coordinator of the Duchenne Community Advisory Board (CAB).
Information Security Officer
Responsible for carrying DDF's vision on privacy and security including the processes, governance, and staff training.
Project Manager in various awareness-raising internal projects at Duchenne Data Foundation.
Coordinating the Financial Accounting functions. Track and report income & expenditures/projects spend, perform monthly accounting and control financial transactions.
Data Protection & Governance, Digital Ethics & Law
Data strategy, protection and governance at Duchenne Data Foundation, Digital ethics and law at BIND project
Operations Officer and Research Project Manager
Implementing operational policies and procedures. Managing collaborative projects related to DMD data.
Project Manager Duchenne Data Repository. Enabling collection, curation and publication of DMD and BMD data.
Administration and Communication Coordinator
Planning and overseeing communication and dissemination activities in Duchenne Data Foundation.
Jeroen van der Werf
Data Protection Officer
Monitors the legal processing of personal data within the organisation, to ensure privacy legislation is applied correctly.