Ribbons for Rare Diseases

“When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training.

Our custom zebra awareness ribbons and non-personalized zebra awareness ribbons support Rare Diseases. When searching our website, you may see a rare disease listed in several places - the cause may be associated with a color other than the zebra awareness ribbon. The reason for this is that often times a group has designated a specific color for a rare disease and does not use the zebra designation. Feel free to use the image or color that best reflects your efforts to raise awareness.

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. This definition was created by Congress in the Orphan Drug Act of 1983. Rare diseases became known as orphan diseases because drug companies were not interested in adopting them to develop treatments. The Orphan Drug Act created financial incentives to encourage companies to develop new drugs for rare diseases. The rare disease definition was needed to establish which conditions would qualify for the incentive programs.

Other countries have their own official definitions of a rare disease. In the European Union, for example, a disease is defined as rare when it affects fewer than 1 in 2,000 people.

There may be as many as 7,000 rare diseases. The total number of Americans living with a rare disease is estimated at between 25-30 million. This estimate has been used by the rare disease community for several decades to highlight that while individual diseases may be rare, the total number of people with a rare disease is large.