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Your Tag: Towards an EU Action Plan on Rare Diseases

ECRD 2026

ECRD 2026 in Prague strengthens the push for a coordinated EU Action Plan on rare diseases

On 3–4 June, EURORDIS–Rare Diseases Europe and Orphanet convened the rare disease community at ECRD 2026 in Prague around a shared call for coordinated European action, including the forthcoming European Blueprint for Rare Diseases.
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.
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

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