EveryLife Foundation for Rare Diseases

Supporting our children is at the heart of what is right and wrong. Join Massachusetts-based advocate and parent, Christian McMahan, in calling on Congress to #RenewPRV. Kids' lives are counting on it. International Rett Syndrome Foundation Take Action: https://lnkd.in/gyQJv_K3 #Cures4RareKids #RettSyndrome?

Join us for the next Caucus Briefing on Pediatric Rare Disease Legislation! Discover how rare disease policies impact the lives of children and teens in our community. This powerful event will feature stories from young advocates and expert insights into critical legislation shaping the future of care for rare disease patients. Speakers Lineup: ? Moderator: Sati Cooper-McCann, 10-year-old rare disease advocate ? Kassidy Chenowith, 10-year-old rare disease advocate ? Chris Jones, Office of Representative Gus Bilirakis ? Brian Fahey, Office of Representative Brett Guthrie ? Rafaella (Rafi) Kopelan, 17-year-old rare disease advocate More dynamic speakers to be announced soon! Register here: https://lnkd.in/eG8stTGD

Join us for an unforgettable evening at the 2024 RareVoice Awards! Mark your calendar for December 11 at the Ronald Reagan Building and International Trade Center in Washington, DC. Celebrate the finalists and awardees who are making a difference! Don’t miss out—click here to attend: https://hubs.li/Q02ZbJn50

?? Calling all rare disease advocates in Richmond! Join us for Rare Disease State Advocacy Day to meet with VA state legislators, share your stories, and push for vital policy changes. Here’s your opportunity to shape healthcare policies that impact diagnosis, treatment, and access to care. No experience required—just bring your voice and a passion for making a difference! ???? Registration is open for VA RESIDENTS ONLY now until Jan. 10, 2025. To be considered for a travel stipend, register before Dec. 13, 2024. Click the link below to register. https://lnkd.in/evnbSGXq

Wisconsin #RareDisease mom Katie Moureau knows the Priority Review Voucher #PRV Program isn’t about just one disease - it’s about giving ALL #RareKids a chance. If the #PRV expires, millions could go without treatment. Share your rare disease story below and take action! Take Action: https://lnkd.in/gyQJv_K3 #Cures4RareKids

Don't forget to register to attend the 2024 RareVoice Awards on December 11th! Take a look at the finalists and prepare to celebrate their successes at the Ronald Reagan Building International Trade Center in Washington, DC. Click this link to register: https://hubs.li/Q02WVxKR0

? ?? Let's talk Rare Disease Advocacy in the New Congress! ? On the next #RDLA Monthly Webinar, policy expert, Nick Manetto with Faegre Drinker Consulting, will provide insights on potential opportunities for our rare disease community with the incoming Administration and 119th Congress. ? Join us November 21st to learn more about how your advocacy can make a difference in the new Congress. ? Register here: https://lnkd.in/gftbTYfM

We are excited for the EveryLife Foundation's upcoming Community Congress Annual Meeting and eager to help shape our rare disease community’s 2025 policy agenda. Looking forward to seeing friends and colleagues there! ? #CCAnnualMeeting2024. To learn more about Community Congress and how to become a member please visit: https://lnkd.in/dYTchFSH Matthew Ellinwood Meagan Perry Emily Roberts Melissa Kennedy Lauren Stanford Amy Nicole Nayar PharmD, HEOR Kim Hollander Adora Ndu, PharmD, JD

The EveryLife Foundation is leading efforts to ensure newborns nationwide receive lifesaving screenings for rare diseases. Thanks to RUSP alignment legislation, 50% of newborns in the U.S. now live in RUSP-aligned states. Learn more about RUSP alignment legislation here: https://hubs.li/Q02Y6H170 Learn more about the EveryLife Foundation's milestones and take part in our #EveryLIfe15for15 campaign here: https://hubs.li/Q02Y6XGL0

The Priority Review Voucher #PRV program passed the House, BUT each day the Senate delays is another day patients, advocates, & families worry about their treatments & future. #Cures4RareKids can’t wait any longer! Tell your representatives to stop delaying and renew #PRV! https://lnkd.in/gyQJv_K3 Grant Bonebrake