Tomasz Grybek

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Name and Surname: Tomasz Grybek

Country: Poland

Contact details: tomek@fundacjabb .pl

Association Name: Foundation of Borys the Hero

Role within the association: CEO

Short bio: Leukodystrophies

Tomasz (Tomek) Grybek is Member of the EURORDIS Board of Directors, he 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 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.

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

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