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Rare Disease Platform

About 30 million EU citizens are affected by more than 6000 different rare diseases and the information is spread between hundreds of registries at national and regional levels.

The EU Rare Disease platform aims to provide researchers, healthcare providers, patients and policymakers with a consistent instrument to improve knowledge, diagnosis and treatment of rare diseases. It will makes registries' data searchable at EU level and will standardise data collection and data exchange; which will increase the valid of each registry and its registration.

Find out more about the EU Rare Disease platform

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