Take Action before December 20

Have you heard of the Rare Pediatric Disease Priority Review Voucher (PRV) Program? Check out this video from EveryLife Foundation to learn how it’s accelerating treatments for rare diseases that disproportionately affect children.

Thanks to the Creating Hope Act of 2012, the PRV Program has driven the development of more than 50 new treatments for 40 rare diseases like SMA, Sickle Cell Disease, Progeria Syndrome, and Rett Syndrome.

The FOP community has also benefitted from this incredible program! Ipsen received a PRV with the FDA’s approval of Sohonos™, the first drug approved for the treatment of FOP in the US.

Urgent Action Needed!

The PRV Program is set to expire on December 20, and we need your help to ensure it continues!

Learn more and use the tool at the link below to send a message to your U.S. Senators. (The House of Representatives has already approved PRV renewal.) If you live in the United States, make your voice heard! You can send a message to your Senators and invite your friends and family to message their Senators too.

everylifefoundation.org/prv

The IFOPA recently joined the National Organization for Rare Disorders (NORD), EveryLife Foundation and 212 other organizations in signing a support letter urging Congress to extend the PRV Program before the December 20 deadline. On December 4, the final letter was sent to Congressional leadership, and the advocacy momentum continues.

Don't forget to invite your friends and family to message their Senators too. Together, we can make a difference!