Take Action Today: Help Restore the PRV Program
Our Epidermolysis Bullosa (EB) Community is facing a major barrier to new treatments. The Rare Pediatric Disease Priority Review Voucher (PRV) Program, which incentivizes companies to develop therapies for very rare conditions, has been expired since December 2024. Without it, promising treatments may never reach our community.
Earlier this month, the U.S. House of Representatives unanimously passed the Mikaela Naylon Give Kids a Chance Act, a rare moment of bipartisan agreement. Now, the bill moves to the U.S. Senate, where it will be considered through a “hotline” procedure that requires unanimous consent — meaning every Senator’s vote matters.
Take Action Today
We encourage you to email your U.S. Senators through debra’s secure system. It’s quick, easy, and ensures your voice is heard in support of the Mikaela Naylon Give Kids a Chance Act and the PRV Program reauthorization.
