Tag: European Commission

SANT Launches Public Consultation on Rare Diseases

EU consultation on disability rights seeks evidence to strengthen inclusive research and data ecosystems

Inviting views on how a stronger EU disability strategy up to 2030 can support inclusive research, data sharing and innovation.
High-Level Meeting on European Research and Innovation for Rare Diseases

High-Level Meeting on a European Research and Innovation Ecosystem for Rare Diseases

Gathering key stakeholders, including EU policymakers, industry leaders, patient advocacy groups, researchers, and healthcare providers. Its goal is to identify concrete actions and incentives to enhance innovation across the rare disease ecosystem.
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.
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

Representatives from patient organisations advocated for robust data platforms and research partnerships
Rare Disease conference kicks off in Warsaw

Rare Disease conference kicks off in Warsaw: Building momentum for a unified EU strategy

“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.”

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

Taking place on 10 April 2025 at the Medical University of Warsaw, Poland

ERDERA's

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