We call it the “rare disease community,” but there is nothing rare about the number of Americans whose lives are touched by these diseases.

Cancer afflicts 18 million Americans. Comparatively, an estimated 30 million Americans — roughly 1 in 10 — live with a rare disease. Individually, the more than 7,000 rare diseases affect relatively small populations, but collectively, rare disease patients represent one of the largest and most vulnerable constituencies in America. 

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A rare disease took my father’s future. I won’t let the FDA take mine