Having a passionate personality and technocratic background, he educated himself with basic rare disease and advocacy knowledge via the EURORDIS Summer School and then with the 14-month Patient Expert Course of the European Patient Academy of Therapeutic Innovation (EUPATI) acquiring basic biotech and regulatory knowledge, where he served as a Member of EUPATI’s Course Committee for the next year, representing the patient voice. Being a EUPATI fellow, he established the Greek EUPATI National Liaison Team.
Locally in Greece he is the patient representative of MDA HELLAS, created an active network of patient advocates, and became a board member of the World Duchenne Organization (WDO) promoting a vibrant network of patient organizations where children with DMD will have access to the best care irrelevant to where they live. He is currently also a board member in European Patient Forum EPF, the umbrella of the patient organizations in Europe. He serves in the Board of Greek Patients Association and is a member of 95 Rare Alliance Greece.
In his role as a patient advocate, he interacts with Regulators, HTA authorities, Industry and Academia promoting the rights of patients with rare diseases to have access to the best care possible and to new, safe and affordable drugs for rare diseases.
As a strong and committed patient advocate for DMD and rare diseases, he serves the patient community through various roles. He is a board member of EPF, a EURORDIS EPAC/TAG member, he served in the Board of the European Forum for Good Clinical Practice (EFGCP), Co-Chairing the Children Medicines Working Party (CMWP), Patient Advisor in TREAT-NMD Advisory Committee for Therapeutics (TACT), DIA’s Program Committee Member and many others.
In 2014 he was nominated patient expert by EMA for DMD and has participated in several of EMA’s Scientific Advice, SAG, Protocol Assistance and CHMP pilot meetings for Duchenne, providing the essential patient representative perspective when companies request regulatory advice or approval.
He currently serves as PDCO member in European Medicines Agency representing EURORDIS since 2017.