Tag: European Reference Networks

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.
World Orphan Drug Congress

ERDERA, RealiseD and INVENTS to lead workshop at WODC Europe 2025

Less than a month to the World Orphan Drug Congress Europe.
Rare Disease Day ERDERA Charts the Path Forward in Collaborative Research

Solvathons: a pan-European success story in rare disease diagnosis

Newly accepted Nature Genetics article inspires ERDERA’s plan to scale up cross-border collaborative workshops
Tomasz Grybek

“ERDERA could become a model of how to align large-scale, cross-border research with real patient needs, so that the knowledge gained is translated into tangible benefits”

Erdera interviews Tomasz Grybek, patient representative and caregiver
collaborative research abstract watercolor

New toolkit strengthens collaboration between ERNs and industry

New survey aims to give under-represented countries a stronger voice in rare-disease research

New survey aims to give under-represented countries a stronger voice in rare-disease research

EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research

EU rare disease conference concludes in Warsaw with renewed focus on early diagnosis and collaborative research

Representatives from patient organisations advocated for robust data platforms and research partnerships
Rare Disease conference kicks off in Warsaw

Rare Disease conference kicks off in Warsaw: Building momentum for a unified EU strategy

Rare disease experts to gather in Warsaw to shape Europe’s future strategy

Rare disease experts to gather in Warsaw to shape Europe’s future strategy

Taking place on 10 April 2025 at the Medical University of Warsaw, Poland
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