Category: Data Hub

HLM Rare Diseases Brussels 2025

HLM Rare 2025 in Brussels: forging a European Declaration for rare and complex diseases

Three days in Brussels help advance the European Declaration on Rare and Complex Diseases
CRN Conference Group Photo

Clinical experts and patient advocates gather in Heidelberg to turn discussion into action on global rare disease research

From shared standards to local impact, the 2nd Clinical Research Networks Conference agreed concrete next steps for interoperable clinical research networks worldwide
ERDERA JTC2026

ERDERA launches 2026 Joint Transnational Call on diagnostics for unsolved rare diseases

Call now open; preproposals due 12 February 2026
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)
Erdera CRN Conference verd 2_page-0002

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.
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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.
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