Supporting rare diseases data sharing at the EU level for more effective patient care

28 February is the Rare Disease Day, meant to raise awareness about rare diseases. The JRC, together with the Commission’s Directorate-General for Health and Food Safety (DG SANTE), is developing the European Platform on Rare Diseases Registration (EU RD Platform) to combine data on rare diseases, scattered across over 600 patients registries in the EU. The platform will facilitate data sharing for the benefits of patients and healthcare providers enabling the publication of EU-wide comparable statistics.
Between 27 and 36 million people are affected by rare diseases in the EU

Further information: Supporting rare diseases data sharing at the EU level for more effective patient care