A rare disease is a disease that affects a small percentage of the population. But how rare does it have to be in order to be classified as a rare disease?
In the United States, there are more than 7,000 known rare diseases that together affect about ten percent of the population (that's roughly 30 million people). In the U.S. a disease is defined as “rare” if it affects fewer than 200,000 individuals, or roughly one in 1500. 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.
In Europe a disease or disorder is defined as rare when it affects less than 1 in 2000 citizens. While an individual disease might be labeled as “rare”, the total number of persons in Europe suffering from a rare diseases is estimated at over 30 million.
So, while the amount of people suffering from any one individual rare disease may be small, together the rare disease population is not rare at all.
#RareButNotForgotten #StrongerTogether #RareDisease
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We intend to use this space to help you get to know 123Genetix, our team and our mission, as well as to create more awareness for rare diseases and the limitations their researchers face.