Erica Barnes

Every year, thousands of parents hear the heart-wrenching news that their child has been diagnosed with a rare disease, news that upends their world. Rare diseases do not discriminate, claiming thousands of lives each year as children and families in Minnesota and across the country wait desperately for a cure.

When a clinical trial slips from “this month” to “next quarter,” nothing dramatic happens in the Capitol — but in a living room somewhere, a parent reassesses hope. Since the Rare Pediatric Disease Priority Review Voucher (PRV) Program lapsed last December, those slips stopped being hypothetical. The PRV Program is one of the few levers that makes investment in research and development for devastating pediatric diseases viable.

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