Tag: Early Diagnosis

European Parliament

European Parliament draft report urges a binding EU rare disease action framework

A legislative own initiative file in the Parliament’s new public health committee sets out what an EU “rare disease action framework” could look like — and why it could change how Europe measures progress for patients.
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.
“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”

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

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

Exterior of European Medicines Agency in Amsterdam

EMA warns of unregulated advanced therapies in the EU

Irene Norstedt

Irene Norstedt: “The EU supports collaboration because no country alone, and no stakeholder alone, has the answer for such huge unmet needs in rare disease research”

WhatsApp-Image-2025-03-05-at-19.25.34-scaled-e1741249993654

RE(ACT) Congress and IRDiRC Conference 2025 concludes with calls for stronger collaboration on rare diseases

Transforming Rare Disease Research in Europe

ERDERA: Transforming Rare Disease Research in Europe

ERDERA's

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