The European Health Data Space - Building a path for rare diseases and learning from its experience

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0:00 Introduction
4:02 Tamsin Rose, Senior Fellow at Friends of Europe | Key Recommendations of Report
14:25 Yann Le Cam, Chief Executive Officer of the European Organisation for Rare Diseases (EURORDIS)
16:55 Tamsin Rose
17:41 Yann Le Cam, Chief Executive Officer of the European Organisation for Rare Diseases (EURORDIS)
19:16 Tamsin Rose
19:55 Ana Rath, Director Orphanet
22:36 Tamsin Rose

24:24 Q&A Albert Counet, President of the Huntington League of Belgian Francophones
26:46 Tamsin Rose

27:52 Andrzej Ryś, Director at the European Commission Directorate-General for Health and Food Safety
32:15 Tamsin Rose
32:58 Andrzej Ryś, Director at the European Commission Directorate-General for Health and Food Safety
35:36 Tamsin Rose
36:16 Maurizio Scarpa, Coordinator, European Reference Network for Hereditary Metabolic Diseases (MetabERN)
41:21 Tamsin Rose

42:12 Q&A Tapani Piha, Special Advisor for EU Health Policy and Digital Health at FIPRA International
45:07 Tamsin Rose

45:41 Stelios Kympouropoulos, Member of the European Parliament
50:53 Tamsin Rose
51:24 Juozas Olekas, Member of the European Parliament and former Lithuanian health minister
54:16 Tamsin Rose

55:01 Q&AXavier Kurz, Head of Surveillance & Epidemiology service at the European Medicines Agency
58:00 Conclusion
Category
Health
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