The Duchenne Data Foundation board consists of experts in the field of Duchenne muscular dystrophy, data collection and analysis, regulations and policy.
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.
Mother of Giovanna and Rafael who has Duchenne Muscular Dystrophy. Public relations, postgraduate in business and finishing a new degree in administration. One of the founders of the largest muscular dystrophy patient organizations in Brazil.
Background in biomedical engineering. He is currently working as a programme officer in medical technology at the domain of Applied and Engineering Sciences of the Dutch Research Council (NWO).
Α doctorpreneur and the Executive Chairman of HealthCare Global Enterprises Ltd. He is a radiation and medical oncologist with over 40 years of experience.
Father of a daughter, Lizanne, with Duchenne Muscular Dystrophy. Background in Economics at Tilburg University, Law at Maastricht University and Risk Management at New York University-Stern School of Business. His most current professional role is Chief Investment Officer.
Data Protection & Governance, Digital Ethics & Law
Data strategy, protection and governance at Duchenne Data Foundation, Digital ethics and law at BIND project
Information Security Officer
Responsible for carrying DDF's vision on privacy and security including the processes, governance, and staff training.
Operations Officer and Research Project Manager
Implementing operational policies and procedures. Managing collaborative projects related to DMD data.
Coordinating the Financial Accounting functions. Track and report income & expenditures/projects spend, perform monthly accounting and control financial transactions.
Jeroen van der Werf
Data Protection Officer
Monitors the legal processing of personal data within the organisation, to ensure privacy legislation is applied correctly.
Planning and overseeing management and administration activities in the Duchenne Data Foundation.
Project Manager in various awareness-raising internal projects at Duchenne Data Foundation.
Project Manager Duchenne Data Repository. Enabling collection, curation and publication of DMD and BMD data.
Duchenne CAB Coordinator
Mother of an adult with Duchenne. Coordinator of the Duchenne Community Advisory Board (CAB).
Building and managing Duchenne Data Repository & Duchenne Map. Collecting, optimizing & converting raw data to analyzable data
Project & Communication Manager
Developing and managing Duchenne Patient Academy. Facilitate on-boarding and population of data in Duchenne Map.