Here at AHRO we are paying recognition to Rare Disease Day.
Rare Disease Day is celebrated on the last day of February every year. The main aim of Rare Disease Day is to raise awareness among the general public and policy makers about rare diseases and their impact on patients’ lives. Aimed primarily at the general public, the campaign also aims to raise awareness among policy makers, regulators, industry, researchers, healthcare professionals and anyone with a genuine interest in rare diseases.
Rare disease awareness is so important because 1 in 20 people will live with a rare disease at some point in their lives. Despite this, there is no cure for most rare diseases, and many remain undiagnosed. Rare Disease Day raises awareness of rare diseases among the general public while encouraging researchers and policy makers to address the needs of people living with rare diseases.
Rare Disease Day is celebrated by hundreds of patient organizations around the world working locally and nationally to raise awareness of the rare disease community in their country. Since the creation of Rare Disease Day by EURORDIS and its National Allied Council in 2008, thousands of events have taken place around the world, bringing together hundreds of thousands of people, and receiving widespread media coverage.
The campaign started as a European event and gradually became a global phenomenon. The United States joined in 2009, and in 2018 94 countries from around the world participated. Hundreds of cities are still participating in Rare Disease Day, and we hope to see more.