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Tag: ERDERA

International Patient Organisation for Primary Immunodeficiencies IPOPI

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

Daria Julkowska ERDERA Science Webinar

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

Triplet repeat expansion project sets benchmark for public-private collaboration

Triplet repeat expansion project sets benchmark for public-private collaboration

Sofie Skoubo

“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”

“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone” Alexandre Mejat

“I hope ERDERA solidifies the mindset that no single group—be it clinicians, patients, researchers, public authorities, or private entities—can succeed alone”

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

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

ERDERA at the Chan Zuckerberg Initiative workshop on systematically characterising rare diseases

ERDERA at the Chan Zuckerberg Initiative workshop on systematically characterising rare diseases

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