Rare Disease Day® takes place on the last day of February each year. 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. It’s never too early to get involved!
The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside our sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign. To learn what’s happening around the world, visit the global Rare Disease Day website at rarediseaseday.org.
Anyone can get involved in Rare Disease Day! On this site, US participants can find, suggest and get involved in events taking place across the country.
What is a rare disease?
In the US, any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children.
Besides dealing with their specific medical problems, people with rare diseases struggle to receive a proper diagnosis, find information and get treatment. The rarity of their conditions makes medical research more difficult.