Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. Now, the concept is rippling out around the world.
Each year, World Rare Disease Day will be observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). Our goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.
In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease.
Alone we are Rare, Together we are Strong
Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For 2010, our focus is on the unique partnership between patients and researchers seeking to develop new diagnostics and treatments.
The Rare Disease Day website (http://www.rarediseaseday.us) focuses on Rare Disease Day activities in the U.S. To learn what’s happening around the world, go to the global Rare Disease Day website at http://rarediseaseday.org. An event in Argentina will feature Moebius Syndrome.
