Category: Data Hub

World Orphan Drug Congress USA 2026

World Orphan Drug Congress USA 2026

More than 280 speakers from industry, regulators, patient organisations, investors and healthcare providers, and aims to showcase new science, technologies and policies that can accelerate orphan drug development and improve access to therapies for people living with rare conditions.
Emine Eylul Taksin

“By supporting more joint projects and research partnerships, Türkiye’s National Mirror Group can help ensure that the country’s scientific strengths translate into tangible benefits for patients”

ERDERA interviews Emine Eylül Taşkın, Project Manager at ERDERA and at the İzmir Biomedicine and Genome Center (IBG)
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One month to go: register now for the 2nd International Conference on Clinical Research Networks

9-10 December, Heidelberg and online — last places for in person attendance; free livestream for registered participants.
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Survey re-opened: help pinpoint where consultancy makes the biggest difference in rare disease research

Community input invited on practical consultancy needs in rare disease research.
complex structure

Accelerating Innovation Through Coordinated Research Platforms: The ERDERA Approach

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.”
EDERA WODC & GAM - Preview- JVDPhotography-4

ERDERA Open Session: science and advocacy align to advance rare disease research and care

Amsterdam and online, convening clinicians, scientists and advocates to share progress and the power of patient led policy to improve diagnosis and care.
EDERA WODC & GAM - Preview- JVDPhotography-1-min

ERDERA at WODC Europe 2025: wrap up and next steps

Sharing patient‑centred methods, early diagnostics, and data‑driven trial innovation to accelerate rare disease research across Europe.
WODC27102025

ERDERA’s workshop draws strong engagement at WODC Europe

Enhancing active patient involvement and data models across rare disease research.
webinar

ERDERA workshop to widen participation of underrepresented countries in 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.
Training online

Information Webinar – ERDERA Joint Transnational Call 2026

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.
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