Hacking on health: open source for the rare disease community
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Rare diseases are defined as as those afflicting populations of less than 200,000 patients, or about 1 in 1,500 people. There are about 7,000 rare diseases, the majority of which are genetically related and commonly affecting the very young (infants). At first glance, rare diseases seem to only affect a small number of people, but in reality their aggregate impacts close to 30 million patients in the US, and about 25 million in the EU alone. This impact also extends to the millions of caregivers and families, who also feel and live with the disease, just in a different way.
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