Rare Disease Day is an annual awareness-raising event coordinated by EURORDIS at international level, national alliances and patient organizations at national level.

The main goal of Rare Disease Day is to raise awareness among the general public and decision makers about rare diseases and their impact on the lives of patients.

The campaign is primarily aimed at the general public but is also designed for patients and patient representatives, as well as politicians, public authorities, policy makers, industry representatives, researchers, health professionals and anyone with a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its National Alliances Council in 2008, more than 1,000 events have been organized worldwide reaching hundreds of thousands of people and generating a significant amount of media coverage.

The political momentum generated by this day also served advocacy purposes. He has contributed significantly to the development of national plans and policies for rare diseases in a number of countries.

Although the campaign started as a European event, it has gradually become a global event, with more than 70 countries participating in 2013. We hope that more countries will join in 2014. Our goal is for the World Health Organization to recognize the last day of February as the last day of February. From February. The official Rare Disease Day and to raise the growing awareness of rare diseases around the world.

About our partners

Rare Disease Day would not be possible without the ongoing efforts of patient organizations around the world, building awareness locally for people with a rare disease and their families. We especially thank our official Rare Disease Day partners, the National Alliances. National alliances are umbrella organizations that work to regroup multiple rare disease organizations in a given country or region. You'll find a list of Rare Disease Day's official partners at the bottom of this page, and you can link to their website by clicking on their logo.