Earlier this week, the Zebra Diagnosis Coalition took part in the World Orphan Drug Congress 2026 (WODC) in Amsterdam.
For the Zebra Dx Coalition, WODC 2026 was a valuable opportunity to show how health-economic evidence can help make earlier diagnosis a policy priority.
We first joined Sanofi’s workshop “Early diagnosis: what’s needed to make change happen?”, which brought together more than 70 participants.
The following day, we hosted our own panel, “How early diagnosis can help with Health Economic outcomes?”, moderated by Flaminia Macchia (FIPRA) and featuring Gulcin Gumus (EURORDIS-Rare Diseases Europe), Malwina Mejer (Copenhagen Economics), Vinciane Pirard (Sanofi) and Anna Lawson (Alexion – AstraZeneca Rare Disease). Together, our four panelists discussed why early diagnosis matters – for patients first and foremost, but also for health systems and society as a whole -, what barriers stand in the way of timely diagnosis, what is the value of our national studies, and how this economic evidence generated will be translated into advocacy at both national and European levels to drive policy change.
Discover the key takeaways from both sessions in our full report below!
And the conversation continues: we will present our national studies at the HLM4RARE Conference from 1 to 3 December 2026. Stay tuned!
