Rare Disease Day History
Rare Disease Day seeks to raise awareness of uncommon diseases which often lack treatment and accessible drugs. A Rare Disease is also known as an Orphan Disease. Rare Diseases typically affect a small percentage of the population. According to rarediseaseday.org, 1 in 20 people will suffer from a rare disease in their life. There are no available cures for the majority of the rare diseases and many continue to go undiagnosed. This day encourages many researchers and policy makers to promote the essential needs for the people living with rare diseases.
This observance is promoted by Rare Diseases Europe (EURORDIS) which is a patient-driven organization dedicated to representing 869 rare diseases. It is typically celebrated on the 29th of February as it is a rare date being that it occurs every four years.