Your Tag: European Reference Networks (ERNs)

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European Blueprint sets out community priorities for a coordinated EU Action Plan on Rare Diseases

EURORDIS’ European Blueprint proposes 18 priority actions across six areas, offering a community-led foundation for a future EU Action Plan on Rare Diseases.
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ERDERA Policy Brief: Making all data count for rare disease research and health outcomes – from policy recommendations to implementation

Making all data count for rare disease research and health outcomes – from policy recommendations to implementation
uropean Human Genetics Conference (ESHG) 2026

At ESHG 2026 in Gothenburg, ERDERA’s diagnostics work reviewed early progress and the next phase ahead

At the European Human Genetics Conference 2026 in Gothenburg, ERDERA’s Diagnostic Research Workstream reviewed progress, highlighted early results and used a major European genetics meeting to examine how advances in data sharing and genomic analysis may strengthen rare disease diagnosis across countries.
ERDERA Policy Brief

ERDERA Policy Brief: European Biotech Act

The European Rare Diseases Research Alliance (ERDERA), together with the European Reference Networks (ERNs), provides the missing operational layer required to implement the European Biotech Act across the full innovation pathway —from discovery to patient access.
Sveriges riksdag (house of parlament).

Sweden adopts first national strategy for rare health conditions

Sweden has adopted its first national strategy for rare health conditions, aiming to improve coordination, equity and access to care between 2026 and 2030.
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Rare disease preparedness: the time is now

Members of the International Rare Diseases Research Consortium examine how pandemic preparedness models could inform a coordinated global approach to rare disease diagnosis, research, care and therapeutic development.
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Advancing Rare Disease Diagnostics: The ERDERA Diagnostic Research Workstream Webinar Series

A new online learning series for ERN professionals, clinicians, researchers, and stakeholders.
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Two EJP RD MOOCs open facilitation windows for the rare disease community

Two expert‑led facilitation windows linked to EJPRD‑developed MOOCs, give learners the opportunity to engage directly with specialists in health data governance and translational research for rare diseases.
Factsheet – How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)

Factsheet – How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)

Overview of the European Commission’s coordinated approach to rare diseases, including policy, research, and the role of European Reference Networks.
Radka Kaneva and Petia Stratieva, Sofia, March 2026

“National Mirror Groups are essentially a bridge — bringing European developments, standards and opportunities to clinicians and researchers.”

ERDERA interviews Prof. Radka Kaneva and Dr Petia Stratieva, two leading members of Bulgaria’s National Mirror Group (NMG), to explore how the country is working to align its rare disease ecosystem with European developments.
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