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The H.A.R.D. Facts• There are over 10,000 known rare diseases
• 30 million people in the US have been diagnosed with a rare disease and over half of them are children • 80% of rare diseases are genetic in origin • 30% of children with a rare disease will not live to see their 5th birthday • It takes an average of 8 years and 10 specialists to receive an accurate diagnosis of a rare disease • 95% of rare diseases do not have an FDA-approved therapy • There is a lack of quality information and scientific knowledge of rare diseases |