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Orphan Disease Statistics

I'm reposting this entry from several years ago since Fight For Phoebe changed blogging platforms and this article wasn't previously available from this website. I think that it's pertinent now as it was then.


Came across some sobering statistics about orphan diseases. According to the FDA, orphan diseases are defined as "as a condition that affects fewer than 200,000 people nationwide."


That doesn't sound like a lot, especially with a population of around 300 million people. But that 200,000 number is for each disease. So looking at it in the aggregate gives a more accurate picture of the challenge:

  • There are approximately 7,000 such orphan diseases;

  • 30 million people in the U.S. alone are living with them--10% of the population. It's estimated that 350 million people worldwide suffer from orphan diseases.

  • Put another way, if all the people with orphan diseases lived in one country, it would be the 3rd most populous country in the world.

  • 50% of sufferers are children.

  • Saddest of all, 30% of those children will not live to see their fifth birthday.

For more information, please check out Global Genes.

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