Webinar: Barriers to Timely Diagnosis of Rare Diseases
Date: 25 June 2026, 14:00-15:15 CEST
Location: Online
On 25 June 2026, the Zebra Dx Coalition hosted a webinar presenting the findings of its White Paper on Barriers to Timely Diagnosis of Rare Diseases.
The online session brought together a high-level panel of speakers:
- Flaminia Macchia, Senior Advisor, FIPRA
- Jan Swiderski, Senior Director, Government Affairs, Kyowa Kirin and Zebra Dx Coalition Partner
- Jessie Dubief, Social Research Director & Rare Barometer Lead, EURORDIS – Rare Diseases Europe
- Malwina Mejer, Senior Economist, Copenhagen Economics
This Webinar explored the findings of the Zebra Diagnosis Coalition’s White Paper on the Barriers to Rare Disease Early Diagnosis, including the consequences of these barriers for patients, healthcare systems, and society. Speakers also addressed how targeted data can support an investment case for early diagnosis of rare diseases.