The rare disease community starts the year with renewed efforts to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program. 2026 offers us unique opportunities to push the Give Kids a Chance Act over the finish line and ensure that our children receive lifesaving treatments.
On December 17, 2025, the Senate tried to pass The Give Kids a Chance Act, legislation that includes the reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program, via unanimous consent. Unfortunately, that vote failed due to disagreements about adding other health-related program reauthorizations into the existing Give Kids a Chance Act.
While this was deeply disappointing, much progress has occurred thanks to the efforts of every member of our rare disease community.
Unlike December of 2024, the work to reauthorize the PRV Program does not have to start over from scratch, and with our united voices calling for action, we are hopeful that the Senate will act without delay. In the short term, the bill has two paths forward for passage:
- Another unanimous consent vote attempt; or
- Its addition to a broader healthcare or funding legislative package, which may be considered at the end of January or in the months following.
The PRV Program must be reauthorized. This program has facilitated innovative breakthroughs that far exceeded its goals, providing over 60 vouchers across more than 40 rare diseases, most of which had no prior treatment.
The Give Kids a Chance Act cannot be politicized. It should be treated for what it is: a lifesaving program for America’s children.
The EveryLife Foundation calls on the Senate to act swiftly and pass the Give Kids a Chance Act to ensure that life-saving therapy development remains a resource for innovation and treatment. We are grateful for the bipartisan support the legislation received in December and for the Department of Health and Human Services’ letter of support for the bill. There are no policy disagreements about the importance of the Give Kids a Chance Act. Politics must not stand in the way.
To learn more about engaging with your Senators to support reauthorization of the PRV Program, and to access shareable resources, please click here. If you, your family, or your company has experienced the impacts of the PRV Program’s lapse, and you would like to share your story, please email policy@rareadvocates.org.
