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Tomasz Grybek 

Tomasz Grybek 

Tomasz (Tomek) Grybek was elected to the EURORDIS Board of Directors in 2023.

Tomek is an economist by training, Quality Assurance & Food Safety Manager by profession. Currently he is preparing his doctoral dissertation in the science of quality and management at the University of Gdansk.

Tomek has more than 15 years of professional working experience starting with projects’ coordination and advisory activities related to the implementation of the European Structural and Investment Funds in Poland, through the involvement in the Polish Aid advisory project in Moldova and ending up with managerial role related to the ISO quality systems and with growing interest in SDGs, One Health approach and Food Safety Culture phenomenon.

He is also a CEO of a patient organization called Foundation of Borys the Hero focused on strategic advisory for public entities. His involvement covers various local and regional advisory activities related to strategic planning of plans & programs dedicated to people with disabilities and living with rare diseases. As a Patient Advocate Tomasz is involved as an e-PAG Member for European Reference Network or Rare Malformation Syndromes, Intellectual and Other Neurodevelopmental Disorders ERN-ITHACA and Patient Board Member of European Reference Network for Hereditary Metabolic Disorders MetabERN. Furthermore, he cooperates closely with the Rare Disease Centre of Medical University in Gdansk.

Tomek is also involved in EURORDIS Therapeutic Action Group (TAG) as he is Member representing patients’ organizations nominated by the European Commission to the Paediatric Committee of the European Medicines Agency (EMA PDCO), a scientific committee responsible for activities on medicines for children.

He is a father of a child living with rare neurological disease called metachromatic leukodystrophy.

Tomek defines himself as an enthusiast of biography books, strong coffee and jazz music.