Eirini Daskalopoulou’s Role in Shaping Global Rare Disease Care Pathways
Rare Diseases International, in collaboration with Rare Care Centre and Wilhelm Foundation, is launching a Working Group to develop a Model Care Pathway for Rare Diseases adaptable to different contexts and healthcare settings.
TEDDY is excited to announce that Eirini Daskalopoulou, member of the Panhellenic Advocate for Inherited Metabolic Diseases “KRIKOS ZOIS”, has been invited to participate, as Patient Advocate, in the Global Network for Rare Disease (GNRD) Working Group on Care Pathways for Rare Diseases International, holding the position of Reviewer. The GNRD is a strategic initiative designed to enhance healthcare systems for rare diseases by establishing a global network of specialized knowledge and expertise.
Eirini is a lawyer and a Master of Science (MSc) student in Bioethics and Medical Law at Aristotle University of Thessaloniki, Greece, and the new team leader of KIDS RARE HELLAS (Young Patient Advisory Group) within TEDDY KIDS Network. With a focus on the intersection of law, ethics, and healthcare innovation, she is dedicated to advocating for patients’ rights. As the General Secretary of KRIKOS ZOIS, Eirini promotes youth engagement and policy reform for rare disease patients.
In 2024, she became a Young Ambassador for European Organization for Rare Diseases (EURORDIS), representing young patients at major events like the European Youth Week in Brussels and the iCAN Summit in Bari. Eirini is also a member of the Patient Expert Committee (PEC) of OrphaDev4Kids (OD4K) European Project, and actively contributed to initiatives like the European Medicines Agency (EMA) Survey on Artificial Intelligence in drug development and the European Rare Disease Research and Education Alliance (ERDERA) Young Patients Training in Athens.
As a Reviewer in the GNRD Working Group on Care Pathways for Rare Diseases International, Eirini will provide valuable feedback on the documents and results developed by the Core Working Group, ensuring that care pathways for rare diseases are inclusive, practical, and globally relevant. Her selection reflects both her expertise and her unwavering commitment to improving the lives of those affected by rare and undiagnosed diseases.
TEDDY is confident that her contribution will be invaluable to the entire rare disease community worldwide.