RARE DISEASE FACTS & STATISTICS
1 in 10 … It Could be You!
- Over 10,000 Rare Diseases
- 1 in 10 have a Rare Disease
- 50% of those affected are children
- 30 million Americans affected ….. 350 million worldwide About 100 million US constituents directly involved with a loved one’s care
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- 30 million Americans affected
- 350 million worldwide About 100 million US constituents directly involved with a loved one’s care
- $966+ Billion annual economic burden
- $437B Indirect costs
- $418B Direct medical costs
- $111B Non-medical and not covered by insurance
- If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country
- Rare diseases are responsible for 35% of deaths in the first year of life
- 80 percent of rare diseases are caused by faulty genes
95% of rare diseases don’t have an FDA approved therapy
… imagine if only 5% of the cancer & HIV patients had therapies!