Board & Staff

Board Members

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

Chairman
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.

Max Dumoulin

Board Member
Max is responsible for development of new services and offerings in collaboration with Elsevier’s academic customers. With Dutch partners he has recently developed a Rare Disease Monitor and he is also a member of the European ERDERA rare disease research alliance. Max has extensive experience in product, marketing, sales and communications. He holds a Master of Science degree in Business Administration from Erasmus University Rotterdam and a Bachelor of Arts degree in Philosophy from the University of Amsterdam.

Annick Faes

Board Member
Mother of Lander, who has Duchenne Muscular Dystrophy. A technology leader in the MedTech business, with focus on Business Technology, Patient facing solutions, Data & Analytics, Artificial Intelligence and technology supporting commercial business.

Roman Fišer

Board Member
Father of Vojta, who lives with Duchenne Muscular Dystrophy, and an active member of Parent Project Czech Republic. He has a strong professional background in IT infrastructure and systems architecture, with a proven track record in managing large-scale on-premises, cloud, and hybrid deployments. Currently, he serves as Infrastructure Manager at Czech Television.

Arjen Bergsma

Board Member
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).

Staff

Alexandros Nousias

Data Protection & Governance, Digital Ethics & Law
Data strategy, protection and governance at Duchenne Data Foundation, Digital ethics and law at BIND project

Christos Koziaris

Information Security Officer
Responsible for carrying DDF's vision on privacy and security including the processes, governance, and staff training.

Elvina Sakellariou

Operations Officer and Research Project Manager
Implementing operational policies and procedures. Managing collaborative projects related to DMD data.

George Marzelas

Financial Controller
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.

Nicoletta Madia

Project Manager
Project Manager in various awareness-raising internal projects at Duchenne Data Foundation.

Sergiu Siminiuc

Technical Officer
Building and managing Duchenne Data Repository & Duchenne Map. Collecting, optimizing & converting raw data to analyzable data