EveryLife Foundation for Rare Diseases’ Post

This week, the EveryLife Foundation was proud to be part of the Global Genes 2024 Rare Advocacy Summit! 🙌 🌟 During Annie Kennedy’s session, hundreds of patient advocates flooded the Capitol Switchboard with calls to US Senators, urging them to pass the Creating Hope Act and reauthorize the pediatric Priority Review Voucher #PRV program. 🌟 In the ‘Empowering Advocacy: Federal, State & Patient Insights’ panel, YARR member Anneliese Williams shared how she channeled her anger into advocacy through #YARR, while James Griffin spoke about becoming the voice he always wished for: 'I took it upon myself to speak up and make sure no one else faces the economic burdens my family did.' As Annie Kennedy emphasized, our rare disease community is powerful beyond measure. Together, we can overcome every challenge. 💪 #WeekInRare #raredisease #kansas #policy Brooke Allen-Thomas Stacey Seeloff Wendy Chung Shannon von Felden #PalomaJuarez

Thank you, Congress, for including a short-term extension of the Rare Pediatric Priority Review Voucher Program in the Continuing Resolution, funding the government until Dec. 20th. Kids are counting on Congress to pass a long-term solution before the deadline. To learn more please visit: https://lnkd.in/gyQJv_K3 #Cures4RareKids #PRV #CreatingHopeReauthorizationAct

A rare disease diagnosis is life changing. The Rare Pediatric Priority Review Voucher (PRV) Program would give kids hope for a brighter future. Urge Congress to take action and make this program happen! Learn more and take action! https://lnkd.in/gyQJv_K3 #Cures4RareKids #RettSyndrome #EveryLifeFoundation #GiveKidsaChance International Rett Syndrome Foundation

We are launching ‘Pride in Rare’ Facebook and Discord groups! Join us for conversations on LGBTQIA and rare disease experiences, policies, and resources. Together, let's advance equitable access to diagnoses, treatments, and cures for all in our rare disease community. Go to https://hubs.li/Q02R027C0 for more information. Join the Discord server here: https://lnkd.in/eYh-kcFp Join the Facebook group here: https://lnkd.in/ezPySic2

🚨 Breaking News! The House just passed a 5-year renewal of the Rare Pediatric Priority Review Voucher (PRV) Program as part of the Give Kids a Chance Act. Thank you to Rep. Gus Bilirakis, Rep. Anna Eshoo, Rep. Lori Trahan, Rep. Michael McCaul, Rep. Nanette Diaz Barragán and Rep. Michael C. Burgess for your steadfast leadership and commitment to this life-saving legislation. 👉 Next Step - The Creating Hope Reauthorization Act will be marked up by the Senate HELP Committee this Thursday, September 26. Please take action and urge your senators to support this critical legislation. #Cures4RareKids Take Action Here! https://lnkd.in/eaCTT86h

Reminder!! This is happening tomorrow!! Don't forget to register below:

⏰ Important Update! Progress has been made, but we’re not across the finish line yet. The Creating Hope Reauthorization Act will be marked up by the Senate HELP Committee this Thursday, September 26. Help us ensure that Congress understands that reauthorizing the #PRV is a matter of life or death for the children whose hope for life-saving therapies depends on their votes next week. Please take action and urge your senators to support this critical legislation. #Cures4RareKids Take Action Here! https://lnkd.in/eaCTT86h