The EveryLife Foundation for Rare Diseases has sent a joint letter to Congress calling for the passage of a long-term extension of the Rare Pediatric Disease Priority Review Voucher Program before it expires on December 20th. This letter was sent in partnership with the National Organization for Rare Disorders (NORD) and more than 200 patient advocacy organizations.
The Creating Hope Reauthorization Act of 2024 will extend the Rare Pediatric Priority Review Voucher (PRV) Program, an initiative that has spurred the development of more than fifty new treatments for rare diseases since its launch in 2012. The PRV is a critical lifeline for millions of Americans affected by pediatric rare diseases waiting for the hope and relief that new treatment options can provide.
For more information on the PRV and its impact on the rare disease community, please visit our background information page.
All signatory organizations to this letter urge Congress to pass the Creating Hope Reauthorization Act, or to include its provisions within a larger legislative package, before the expiration of the PRV program on December 20th. Failure to do so will set back the rare disease community and compromise the progress made towards finding lifesaving treatments and cures as a result of the PRV Program.
While Congress may always have another session just around the corner, families with a rare disease diagnosis do not have the luxury to watch days turn into weeks and weeks into months of inaction. Time is an invaluable resource for the millions of Americans dealing with rare diseases.
All rare disease stakeholders, the public, and allies to the rare disease community can join our call for Congress to act before it is too late.
