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Rare Disease Dayin Europe

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

Each year, EURORDIS coordinates Rare Disease Day at the international level, and 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. For Rare Disease Day 2014, a Policy Event brought together stakeholders from the European Commission, patient organisations, research, and industry to discuss topics related to the year’s Rare Disease Day theme: Care.

This year, the policy event will discuss topics related to Rare Disease Day 2015's theme: Living with a Rare Disease. The event will focus on Patient testimonies: How patients' daily experience living with a rare disease impacts policy and RareConnect, a EURORDIS initiative: Online communities offering people living with a rare disease and their families a safe exchange and conversation.


 

 

Events in Europe

National Alliance representing Europe

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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.