We’re grateful to our PRV champions, who keep the rare disease community top of mind in our country’s highest halls. As the program’s deadline approaches, we urge all lawmakers to support the Creating Hope Reauthorization Act to preserve hope for years to come.

Update: we’re now just 30 days away from the PRV program’s expiration. Congress must act - the rare disease community doesn’t have any more time to lose.

As @NORD CEO Pamela Gavin puts it, letting the PRV program expire would be “simply unacceptable.“ Our community knows that the PRV program is a proven, smart policy. We call on Congress to reauthorize the program ahead of the Sept. 30 deadline. More: aadcnews.com/news/congress-…

Time is running out on the PRV program. As our Executive Director Stacey Frisk tells Pink Sheet, Citeline Regulatory, failure to reauthorize means "fewer treatments and cures.” Thanks Stacey and @Inozyme COO Matthew Winton for lending your voices to this important issue bit.ly/3XnGQXM

As Inozyme Pharma COO Matthew Winton says, “Our collective voice can ensure that innovation and hope continue to thrive for those who need it most.” We look forward to more lawmakers joining that voice to reauthorize the PRV program before September 30.

To @senschumer, Leader McConnell, Speaker Mike Johnson, Hakeem Jeffries: rare disease companies are urging you to pass the Creating Hope Reauthorization Act of 2024. As leaders in the rare disease community, we implore you to reauthorize this critical program prior to its expiration.

PRVs have allowed Ultragenyx to include programs in its portfolio that it wouldn’t have otherwise been able to, especially for diseases with no existing treatments. Congress must save the PRV program to ensure companies can advance rare disease treatments.

Our COO Matt Winton spoke with Pink Sheet, Citeline Regulatory senior editor Sue Sutter about the urgent need for Congress to reauthorize the U.S. FDA Priority Review Voucher (PRV) program before it expires on 9/30. Read more: bit.ly/4ggDJJy The Rare Disease Company Coalition #RareDiseases

The full impact of the PRV program is still being realized. Rare disease treatments require continuous, consistent investment to yield the results that patients deserve — which Priority Review Vouchers help provide. Congress must save this vital program before 9/30.

As our Executive DirectDor Stacey Frisk notes in InsideHealthPolicy, “it is imperative that Congress listens to the rare disease community.” That’s why Congress must act swiftly and pass to Creating Hope Reauthorization Act before September 30. Read more: insidehealthpolicy.com/inside-drug-pr…

We agree with Kirsten Axelsen (she/her): "Simply exempting the drugs that have one single orphan indication is not enough to protect people with rare diseases." The #ORPHANCuresAct enables companies to follow the science and deliver hope for patients living with a rare disease.

Thank you, Sen. John Barrasso, for your leadership on the #ORPHANCuresAct. This critical bill supports rare disease R&D and promotes innovation for the patients who need it most.

Energy and Commerce Committee has passed the Creating Hope Reauthorization Act with unanimous bipartisan support! This is a huge win for the rare disease community - but the fight isn’t over. Now, we urge HELP Committee Dems and Senate HELP Committee GOP to support this critical bill before September 30.

.Chiesi Global Rare Diseases has brought forth new treatments for alpha-mannosidosis and epidermolysis bullosa patients because of the FDA’s Pediatric #PriorityReviewVoucher Program. We stand with Chiesi and others advocating for a timely reauthorization of this invaluable program.