Dimitrios Athanasiou: Rare diseases, not as rare as you think

How rare are rare diseases? We asked Dimitrios Athanasiou, a prominent rare diseases patient advocate, president of Rare Diseases Greece and founder of 95 Rare Alliance Greece, and member of the Patients and Consumers Working Party in the European Medicines Agency.

In this episode, Mr. Athanasiou reveals that what we think we know about rare diseases is just the tip of the iceberg. Not only do rare diseases affect a far larger number of people than we might imagine, but there is also much more complexity behind their diagnosis and treatment. Accessibility to care, diagnosis and treatment are hindered by high barriers, and patients and their families may risk further discrimination and isolation.

Engaging with policymakers is another crucial aspect to create impact and change for rare diseases patients. Both in member states and in the European Union, patients advocates draw the attentions of decision makers on this important public healthcare issue. The European Medicines Agency is tasked with the approval of new drugs, but the process is often slow and the progress is not brave enough.

How many people are actually affected by rare diseases? What are the visible and invisible barriers that prevent rare disease patients from accessing diagnosis and treatment? In which way children are disproportionately affected? What are European lawmakers doing on this issue? How to design a brave and impactful legislation to address rare diseases? How could the reform of the European Medicines Agency affect progress in this area? Learn more about rare diseases in this episode of the Europe Health Podcast! 

🗣SPEAKER 

Mr. Athanasiou’s engagement into rare disease advocacy began after his son was diagnosed with Duchenne Muscular Dystrophy, a rare and incurable condition. After a period of training, he started his advocacy activity in in Greece, but quickly expanded to the European level.

Mr. Athanasiou holds leadership positions in several rare disease organizations. He is a founding member of 95 Rare Alliance Greece, the greek patients association, and is the chair of Rare Diseases Greece. He is also a representative for the Muscular Dystrophy Association HELLAS, and a board member of both the World Duchenne Organization (WDO) and the European Patient Forum (EPF) 

In 2014, he was appointed as a patient expert for Duchenne Muscular Dystrophy by the European Medicines Agency. He served on the EMA’s Paediatric Committee until 2023 and now participates in the Patients’ and Consumers’ Working Party. His advocacy work involves close collaboration with regulators, health authorities, industry, and academia to ensure that patients with rare diseases have access to high-quality care and innovative treatments.

🎙 EURO HEALTH PODCAST

 Euro Health Podcast focuses on European health policy by giving voice to leading experts. Our goal is to contribute to the debate on better healthcare in Europe, from a policy and a scientific perspective. The podcast is hosted by Jiří Svoboda. 

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