Rare Disease Day was created by EURORDIS-Rare Diseases Europe and itsĀ Council of National AlliancesĀ in 2008, and it has grown steadily in momentum ever since!
Each yearĀ 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,Ā EURORDIS held or supported theĀ organisationĀ of several events at the European level: theĀ EURORDIS Black Pearl Awards, a meeting of theĀ EURORDIS Round Table Companies, the opening of aĀ āRare Livesā photography exhibitionĀ at the European Parliament and a meeting onĀ European Reference Networks, also held at the European Parliament.Ā
Events
Faces of CMT
To mark Rare Disease Day 2021, the European CMT Federation is hosting a global āFaces of CMTā 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 ofĀ families in the house. With our 2021… Continue reading Rare is many, grow in the light and Bloom