It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion. Annie Kennedy is the chief of policy, advocacy, and patient engagement at the EveryLife Foundation for Rare Diseases. (Photo courtesy of the EveryLife Foundation) In the time since, three similar reports have been published: one by the National Institutes of Health (NIH) and multiple partners;…
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