News, Events & Blogs
Why February 29th? The History Behind Rare Disease Day
More than 7,000 rare diseases affect an estimated 1 in 10 Americans, yet public awareness remains limited. Rare Disease Day, established in 2008 by EURORDIS, unites over 100 countries each year to promote research, health equity, and global advocacy. Through education, policy initiatives, and patient-driven storytelling, the movement continues to amplify voices that are too often unheard.
Sometimes, It’s a Zebra
In medical school, many doctors are taught the old saying, “When you hear hoof beats, think horses, not zebras.” This saying means that doctors should generally consider the most likely possibility first when making a diagnosis.
But what do you do when it is a zebra?
What makes a disease rare? In the United States, the Orphan Drug Act defines a disease as rare if it affects fewer than 200,000 Americans or less than one in 2,000 people. A disease is considered ultra-rare if it affects less than one in 50,000 people.