Category: Data Hub

9-10 December, Heidelberg and online — last places for in person attendance; free livestream for registered participants.
On November 12 at 11:00am (GMT+3) , IBG RareBoost will host Dr. Başak Uysal from the ERDERA Coordination Team. She will deliver a presentation titled “Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach.”
Amsterdam and online, convening clinicians, scientists and advocates to share progress and the power of patient led policy to improve diagnosis and care.
Sharing patient‑centred methods, early diagnostics, and data‑driven trial innovation to accelerate rare disease research across Europe.
Enhancing active patient involvement and data models across rare disease research.
20–21 November — A practical ERDERA workshop to connect researchers, clinicians, patients and funders from underrepresented countries to strengthen capacity for inclusive rare disease research.
This information webinar on the 2026 Joint Transnational Call for Proposals is scheduled for 16 December 2025, 15:00–17:00 CET, focusing on resolving unsolved rare genetic and non‑genetic diseases.
The 2026 Joint Transnational Call will be launched on 10 December, with a free information webinar on 16 December
EMA invites feedback to strengthen how the EU generates and uses evidence that reflects what matters to patients, including in rare diseases