29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

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Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. In 2020, 90 events in 103 countries will take place during the day.

We are the 300 million

There are more than 6000 identified rare diseases and it is estimated that 300 million people worldwide is living with a rare disease. This means that approximately 5 % of the world’s population is affected.

This year’s poster features Gauthier and his mum. Gauthier is living with sickle cell anaemia, a specific form of haemoglobin disease. Read his story here.


EURORDIS, The European Organisation for Rare Diseases, is a non-governmental patient-driven alliance of patient organisations representing 884 rare disease patient organisations in 72 countries.