Thank you to the European Economic and Social Committee for inviting our Director of Public Affairs, Valentina Bottarelli, to speak to today’s hearing on their upcoming Opinion "Leaving No One Behind: European Commitment to Rare Diseases”. Ágnes Cser, the EESC Rapporteur, opened today’s first panel by reminding the room of the our community’s high level of unmet needs. 🗣️"Early diagnosis is something that is very important. Families are losing their jobs, they have financial problems and preventable diagnosis can already be achieved in a prenatal stage. I ask you to help us with this opinion." - Ágnes Cser The panel rounded out with contributions from Csaba Kontor, from the Hungarian Presidency of the Council of the EU, and Fulvia Raffaelli, Head of Digital Health at DG SANTE promising continued commitment to rare disease policy advancements. Most notably, Enrique Terol, Health Attaché from the Spanish Permanent Representation to the EU, stressed that there’s a long way to go towards an EU Action Plan on Rare Diseases, but we still need a structured roadmap - “a plan to build The Plan.” The second panel opened with our own Valentina Bottarelli reiterating Mr Terol’s sentiments and underlining the urgently needed actions detailed in our #ActRare2024 priorities. The discussion concluded with Victoria Hedley, Rare Disease Policy Manager, highlighting the importance of national-level plans to progress, and Anne-Sophie Lapointe (PhD) presenting some best practices from France. 🗣️ “The rest of the world look at the EU for national plans.” - Victoria Hedley We now eargerly await the EESC Opinion! 🤝
Looking forward to this!
Head of Unit 'Digital Health' unit - DG SANTE
1moIt was my pleasure to come and explain how the #EHDS #EuropeanHealthDataSpace can bring benefits to the patients affected by rare diseases and to the research community. Now focusing on implementation !