Rare Disease Dayin Europe
Rare Disease Day was created by EURORDIS 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, and 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. Stay turned for more information on this year's Policy Event happening in February 2016!
at the EURORDIS Rare Disease Day Event
http://www.rarediseaseday.org Watch and share the official Rare Disease Day 2014 video! The seventh Rare Disease Day takes place on 28 February 2014. This year's video demonstrates the 2014 theme "CARE" showing the many facets of caring for people living with a rare disease and their families. "Join Together for Better Care" and participate! Join an activity taking place near you to demonstrate global solidarity. Show your solidarity today!
National Alliance representing Europe
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing over 600 rare disease patient organisations in 60 countries, covering more than 4000 diseases.