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. Without it, investments hesitate, timelines drift, and children pay in loss of function they cannot regain. As providers to the Minnesota rare-disease community, we know that kids cannot wait. Congress must restore the PRV Program now.

The PRV Program is simple and effective. When the FDA approves a therapy for a qualified rare pediatric disease, the sponsor earns

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