Crucial PRV Program Lapsed in December, Will Sunset Without Congressional Action
Give Kids a Chance Act Would Revive Program, Provide Necessary Incentives to Spur Research and Development of Rare Disease Treatments
Washington, D.C. — Following the advancement of the Give Kids a Chance Act of 2025 (H.R. 1262/S. 932) by the House Energy and Commerce (E&C) Committee, the Rare Disease Company Coalition (RDCC) applauded the E&C Committee and the sponsors of Give Kids a Chance Act for their leadership and urges the House to bring the bill—which would reauthorize the rare pediatric disease priority review voucher (PRV) program for five years—to a vote.
The PRV program is critical to providing hope for the millions of children in the United States living with a rare disease, 30 percent of whom will not live to see their fifth birthday. Since its creation, the program has helped spur innovations benefiting more than 200,000 patients and addressed the high unmet needs across 47 rare pediatric indications—all at little to no cost to taxpayers.
“With today’s Energy & Commerce Committee passage of the Give Kids a Chance Act, Congress is one step closer to restoring the lifesaving rare pediatric disease PRV program,” said Stacey Frisk, Executive Director of the Rare Disease Company Coalition. “RDCC applauds both the E&C committee and the sponsors of this bill for their continued support and leadership in delivering hope to the rare disease community. Now, the House must act urgently to bring this bill to the floor. Every day without the PRV program in place threatens critical investment in rare disease innovation, delaying potential treatments for children living with devastating, life-limiting conditions. We cannot allow these kids to keep waiting.”
Passage of the Give Kids a Chance Act would ensure continued progress in rare pediatric drug development, benefitting the hundreds of thousands of patients living with a rare disease. The proven, cost-effective program has received broad, bipartisan, and bicameral support since its inception in 2012.
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About the Rare Disease Company Coalition (RDCC): Founded in May 2021, the Rare Disease Company Coalition represents life science companies committed to discovering, developing and delivering rare disease treatments for the patients we serve. As an education and advocacy-focused coalition of companies, our goal is to inform policymakers of the unique challenges and promises of rare disease drug discovery, development and manufacturing for small population sizes so that critical innovation can continue and positive changes can be enacted for the rare disease community. To achieve this goal, we will use our unified voice to advocate for long-term, consistent, equitable and sustainable government policies that enable life science companies to continue to bring hope and provide access to approved treatments to people living with rare diseases. For more information, please visit rarecoalition.com.