Rare on Air host Julien Poulain delves into the crucial role of effective health data-sharing systems for patients with rare diseases by talking to Veronica Popa, Chair of the MCT8-AHDS Foundation and EURORDIS’ Digital Patient Engagement Manager. Veronica candidly reveals her experience grappling with extensive paperwork related to her son's ultra-rare medical condition due to insufficient data sharing within Romanian and European health systems. Jelena Malinina, Data Director at EURORDIS, also joins to examine the EU's plans to modernise health data systems through the proposed 'European Health Data Space', and she explores its potential to enhance healthcare for the rare disease community.
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