When his son was diagnosed with Duchenne Muscular Dystrophy, Dimitrios Athanasiou became a full time international patient advocate in Duchenne and in rare diseases.
Dimitrios Athanasiou founded the Parent Project of MDA HELLAS in Greece. Currently, he is a Board Member of the United Parent Project Muscular Dystrophy (UPPMD), a European Medicines Agency Patient Expert in Duchenne Muscular Dystrophy, and co-chairs EFGCP’s Children’s Medicine Working Party (CMWP).
He is DIA’s EuroMeeting 2017 Program Committee Member. He is also a member of EURORDIS, a EUPATI fellow, and a member of EUPATI’s Course Committee. He established the Greek EUPATI National Liaison Team.
Dimitrios took part in an interview in which he was asked about his role within the network and his expectations. Below is a transcript of the interview which has previously featured in the EURO-NMD monthly newsletter .
a. Tell us a little bit about yourself
“When my son was diagnosed with Duchenne Muscular Dystrophy, a fatal and incurable rare disease, I became a strong international patient advocate in Duchenne and Rare Diseases.
Having a passionate personality and technocratic background, I educated myself 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 I served as a Member of EUPATI’s Course Committee for the next year, representing the patient voice.
Locally in Greece I am the patient representative of MDA HELLAS, a board member of the World Duchenne Organization (WDO) and a board Member of European Patient Forum (EPF). Currently I am serving the rare community EURORDIS EPAC/TAG member, Patient Advisor in TREAT-NMD Advisory Committee for Therapeutics (TACT), DIA’s Program Committee Member and many others.
In 2014 I was nominated patient expert by EMA for DMD and have 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. I am currently serving as PDCO member in EMA representing EURORDIS and Chairing the Patient and Parents Enpr-EMA working group.“
b. What is your role in EURO-NMD?
“My role, as a member of the Patient Advisory Board is to work with the other patient representatives but also with the rest of the stakeholders inside and outside the Network to assure that the patient preferences are taking into account and that the Network is developing in a patient-centered way. My goal is to share the Duchenne Community experience with the rest of the NMD patient advocates learn from them and develop a strong PAB that will influence in positive way the future of EURO NMD”.
c. What are your expectations of the Network?
“EURO-NMD is an essential tool to improve care in NMDs and my expectation is that we will all work together to transform this tool to a patient-centered nationality integrated HUB that will bring together research, clinical development, access and patient centricity in the decisions making throughout the EU.”
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