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> A rare disease is defined as any condition affecting fewer than 200,000 patients in the United States. More than 7,000 such diseases exist, afflicting a total

by dmd 13y ago

> A rare disease is defined as any condition affecting fewer than 200,000 patients in the United States. More than 7,000 such diseases exist, afflicting a total of 25 million to 30 million Americans. Can that really be true? 1 in 10 Americans has a rare disease?

ceejayoz 13y ago
Sure. Most probably just aren't as debilitating as having your flesh turn into bone mass.
PebblesRox 13y ago
I haven't been able to find a good source, but here's what the NCBI says: "In part because data on many conditions are limited to case reports or special population studies, no well-supported estimate exists for the number of people collectively affected by rare diseases. A 1989 government report stated that 10 million to 20 million Americans had a rare condition (NCOD, 1989); the corresponding estimates in 2009 range from 25 million to 30 million (see, e.g., ORDR, 2009). The estimates were not accompanied by analyses or substantive citation of sources." http://www.ncbi.nlm.nih.gov/books/NBK56184/ http://www.ncbi.nlm.nih.gov/books/NBK56184/ The links in the footnotes lead to 404s, but this might be what they're referring to: http://rarediseases.info.nih.gov/asp/resources/ord_brochure.html http://rarediseases.info.nih.gov/asp/resources/ord_brochure.... It doesn't cite sources though and it calls it an estimate. It also says disease or condition, so I'm guessing it includes minor stuff that most people wouldn't really consider a disease. For example, my friend and her mom both have weird ridges on their thumbnails; definitely rare but it doesn't affect their health. Things like that are probably included in the estimate.
mikeash 13y ago
Why not? If 7,000 diseases exist and 30 million Americans have them, then that's an average of about 4,300 people with each disease, far bellow the 200,000 threshold. Obviously, they aren't all near the average, but there's plenty of headroom.
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by dmd 13y ago

ceejayoz 13y ago

Sure. Most probably just aren't as debilitating as having your flesh turn into bone mass.

PebblesRox 13y ago

I haven't been able to find a good source, but here's what the NCBI says: "In part because data on many conditions are limited to case reports or special population studies, no well-supported estimate exists for the number of people collectively affected by rare diseases. A 1989 government report stated that 10 million to 20 million Americans had a rare condition (NCOD, 1989); the corresponding estimates in 2009 range from 25 million to 30 million (see, e.g., ORDR, 2009). The estimates were not accompanied by analyses or substantive citation of sources." http://www.ncbi.nlm.nih.gov/books/NBK56184/ http://www.ncbi.nlm.nih.gov/books/NBK56184/ The links in the footnotes lead to 404s, but this might be what they're referring to: http://rarediseases.info.nih.gov/asp/resources/ord_brochure.html http://rarediseases.info.nih.gov/asp/resources/ord_brochure.... It doesn't cite sources though and it calls it an estimate. It also says disease or condition, so I'm guessing it includes minor stuff that most people wouldn't really consider a disease. For example, my friend and her mom both have weird ridges on their thumbnails; definitely rare but it doesn't affect their health. Things like that are probably included in the estimate.

mikeash 13y ago

Why not? If 7,000 diseases exist and 30 million Americans have them, then that's an average of about 4,300 people with each disease, far bellow the 200,000 threshold. Obviously, they aren't all near the average, but there's plenty of headroom.

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