02 April 2019


The European Commission has recently launched a new online knowledge-sharing platform to help improve the diagnosis and treatment for Europe's 30 million citizens living with a rare disease.


The platform will enable scientists, policymakers and patients make the most of data on rare diseases and new EU-wide standards for data collection and exchange will mean that data can more easily be compared across Europe.

The platform mrges registry data sources to foster the critical mass of patient data needed to trigger pharmacological, transnational or research studies.

By providing EU standards for data collection and data sharing, the platform will for the first time make it possible to search data of rare disease patients.

Such an achievement will enable the creation of critical knowledge for a given disease, allowing research and supporting patients, health care providers and policy-makers.

Visit the official European Platform on Rare Disease Registration.

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