Across the three days, EURORDIS experts showcased how policy innovation, data-driven insights, and meaningful patient engagement. (8/8) #WODC #WODC2025

👉 Learn more about what went on at the ‌World Orphan Drug Congress Europe 2025: go.eurordis.org/k1YvAD

🧠 Finally, Matt Bolz-Johnson spoke on the importance embedding psychological support in R&D. He highlighted how designing clinical research and therapeutic pathways that integrate psychological support can significantly improve the health outcomes of those with rare diseases. (7/8)

🏥 Roseline Favresse also shared findings from the #RareBarometer survey on diagnosis. She noted that access to diagnosis is faster when patients are referred to centres of expertise, underscoring the importance of connecting them through national and European Reference Networks. (6/8)

🤝 Jessie Dubief then presented our #RareBarometer programme, explaining that these studies enable the creation of evidence-based, patient-centred policies. She demonstrated how industry can partner with patient organisations to help them maximise the impact of their own data. (5/8)

💬 Later that day, Julien Delaye contributed to a session on navigating the new Joint Clinical Assessments (JCAs), underlining the importance of patients’ expertise in JCAs and highlighting that patients hold essential real-world data that can strengthen these assessments. (4/8)

💡 On Tuesday, Rosa Catro joined a keynote panel exploring the future of Europe’s Life Science Strategy, stressing the urgent need for an EU Action Plan for Rare Diseases and emphasising the opportunities prevented by the EU Life Science Strategy and the upcoming Biotech Act. (3/8)