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 a consistent tool for researchers, healthcare providers, patients, and policymakers to improve knowledge, diagnosis, and treatment of rare diseases. It will make registry data searchable at the EU level and standardise data collection and exchange, increasing the validity of each registry and its registration.
Contrary to common belief, there is still a lack of information on where and under what conditions many people live, especially in developing countries.
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About JRC Digital Media Hub
JRC Digital Media Hub helps you easily discover how the European Commission's Joint Research Centre (JRC) scientific research and advice are linked to our daily lives in the European Union.
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