Rare Disease Day was created by EURORDIS-Rare Diseases Europe and its Council of National Alliances in 2008, and it has grown steadily in momentum ever since!

Each year  EURORDIS coordinates Rare Disease Day at the international level, as well as with the National Alliances, patient organisations and other groups at the national and local levels.

European-level institutions, including the European Medicines Agency and the European Commission, lend their support to the day by displaying the Rare Disease Day logo on their websites.

To mark the occasion of Rare Disease Day 2018,  EURORDIS held or supported the organisation of several events at the European level: the EURORDIS Black Pearl Awards, a meeting of the EURORDIS Round Table Companies, the opening of a ‘Rare Lives’ photography exhibition at the European Parliament and a meeting on European Reference Networks, also held at the European Parliament. 


Faces of CMT

To mark Rare Disease Day 2021, the European CMT Federation is hosting a global ‘Faces of CMT’ Photography competition in… Continue reading Faces of CMT

Feb 23 – Final Policy Conference

The future of rare diseases starts today – Recommendations from the Rare 2030 Foresight Study This event will be the… Continue reading Feb 23 – Final Policy Conference

Rare is many, grow in the light and Bloom

Stichting SpierKracht Netherlands reaches out global. Covid 19 has quarantined a lot of  families in the house. With our 2021… Continue reading Rare is many, grow in the light and Bloom