Rare Disease Day in Europe
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.
At the European level, support for Rare Disease Day has been demonstrated in different ways, such as the 28 February 2011 release of the European Awareness of Rare Diseases Report, presenting the results of a Eurobarometer survey requested by the Directorate General for Health and Consumers (DG Sanco) and coordinated by the Directorate General Communication. The Directive 2011/24/EU on Patients’ Rights in Cross-border Healthcare was also adopted on 28 February 2011.
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.
Each year, EURORDIS organises a special event at the European level for Rare Disease Day, inviting various EU level policymakers to participate. In February 2016, the 1st Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies was held in Brussels, followed by the 2nd Symposium in 2017. Rare Diseases International, in partnership with EURORDIS, the BLACKSWAN Foundation and the Swiss Foundation for Research on Orphan Diseases, also organised a policy event in Geneva to discuss why and how rare diseases should be included in the global health agenda.
Other highlights of 2017 European events include a drawing contest and the EURORDIS Black Pearl Awards.