Category: Data Hub

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 through variant validation and new technological approaches.
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
Accelerating evidence-driven innovation to unlock fresh indications for established therapies.
Bringing together global experts, healthcare professionals, patient advocates, and policymakers to advance knowledge and strengthen international collaboration in the field of rare diseases.
14 October 2025, Paris NovoHotel Tour Eiffel & Online
A successful training event with 350 registrations from 58 countries and daily attendance averaging 160 participants