Take Action: Support Renewal of the Rare Pediatric Disease Priority Review Voucher (PRV)
Why the PRV Matters
Of the more than 10,000 known rare diseases, over two-thirds begin in childhood, and 95% have no approved treatments.
The Rare Pediatric Disease Priority Review Voucher program is a lifeline for these families and a beacon of hope.
Since 2012, the program has issued over 50 vouchers covering innovative therapies for 39 rare diseases, including spinal muscular atrophy and Rett syndrome, conditions that had limited or no treatments before the program’s inception.
Many of these therapies address ultra-rare conditions that likely would not have reached patients without the incentives created by the PRV.
Importantly, this program costs taxpayers nothing yet delivers immense benefits.
With the program now expired, Congress must act swiftly to renew it, preserving one of the most effective and economical tools available to advance treatments for rare pediatric diseases in the United States.
The Impact on Children and Families
A rare disease profoundly affects every part of a patient’s and family’s life, making them vulnerable and in need of hope. The Pediatric PRV program has extended lives and improved the quality of life for thousands of children. Continued congressional support can save many more.
Join Us in Advocating for Renewal
We are advocating locally—and now you can join the effort to make a difference.
Take action and sign the petition here:
https://everylifefoundation.org/rare-advocates/take-action/