Cure Sanfilippo Foundation, along with nearly 200 other organizations, was glad to be able to sign on to this important letter, urging Congress to secure long-term extension of the PRV Program before the Dec. 20 deadline.
The PRV is The Rare Pediatric Disease Priority Review Voucher (PRV), and it is a government incentive that allows a pharmaceutical company to receive expedited review for a future drug application if they successfully develop and gain approval for a treatment for a rare pediatric disease; essentially, it encourages companies to invest in developing treatments for children with rare conditions by offering faster market access for a different drug through a priority review process.
The Dec. 4, 2024, letter states:
“As you work to finalize legislation for consideration before the end of the 118th Congress, the undersigned 213 organizations urge you to pass or include within any larger bill the provisions of the Creating Hope Reauthorization Act (H.R. 7384/S. 4583), which would reauthorize the highly effective Rare Pediatric Disease Priority Review Voucher (PRV) program for at least five years. Reauthorizing the Rare Pediatric Disease PRV program has broad bipartisan support, including approval by the full House of Representatives in September as part of the amended Give Kids a Chance Act (H.R. 3433). The current authorization is set to expire on December 20th, and a timely, clean and long-term reauthorization is critical to maintaining this important incentive which has effectively spurred drug development to help children living with rare diseases.”
We thank National Organization for Rare Disorders, Inc. and EveryLife Foundation for Rare Diseases (@EveryLifeOrg) teams for spearheading these efforts. On Wednesday of this past week, the final version of the letter was transmitted to Congressional leadership. Read the entire sign-on letter.
Also, thank you to so many in our community who used the EveryLife Foundation’s action alert template to write to their congressional leaders about reauthorizing this important initiative. We have hope that all of this will make a difference and we will keep you posted as we hear any news.
For more information on the PRV, visit: https://everylifefoundation.org/prv/