Tag: 2025

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.
Tomasz Grybek

Rare Disease Community | Tomasz Grybek

World Health Assembly adopts first-ever resolution on rare diseases, signalling a new era of global collaboration

World Health Assembly adopts first-ever resolution on rare diseases, signalling a new era of global collaboration

“Knowing there’s a place where someone will listen, understand, and guide you towards what’s best for your child is invaluable

Rare Disease Community | Dorica Dan

Alexandre Mejat

Rare Disease Community | Alexandre Méjat

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