Category: Clinical Research

World Orphan Drug Congress Europe 2025

Patients as Equal Partners – ERDERA’s PPIE Vision Echoes in Brussels

International Conference on Clinical Research Networks

New Toolkit Strengthens Collaboration Between ERNs and Industry

Scientific Coordinator Daria Julkowska contributes to Science Magazine and Ipsen Foundation’s high-level webinar on rare disease research collaboration 

Have your say: EU AI Act consultation on high-risk systems

Triplet repeat expansion project sets benchmark for public-private collaboration

ERDERA diagnostics research task force showcases impact and ambition at ESHG 2025 

ERDERA launches survey to put rare-disease patients at the heart of research

“If we can remove some of the barriers to accessing education—both visible and invisible—then we could support people with rare diseases in the right way”