Tag: patient advocate

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

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

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”

ERDERA's

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