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21 Jun 2012

The International Rare Disease Day

Illustration for article: The International Rare Disease Day
Rare Disease Day is an annual event coordinated by Eurordis at the international level and National Alliance of Patient Organisations at the national level. It takes place every year on the last day of February.

 

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  The campaign targets primarily the general public but it is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
 
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, more than 1000 events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.
The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
 
Even though the campaign started as a European event, it has progressively become a world event, with the US joining in 2009.