EveryLife Foundation for Rare Diseases

I'm honored to be serving as a part of the planning committee for the Pediatric Inclusion Roundtable -- bringing together leaders from #patientcommunities, #FDA, #NIH, #industry, #clinicians, #Bioethicists, and more -- to explore opportunities to ensure that clinical trials are fully representative of pediatric patient populations so that approved products are availability to ALL patients who awaiting safe and effective therapies upon first approval. All that's missing is YOU! Please join us - in person or virtually - to view the agenda and register, visit https://lnkd.in/e4nZbzDr Speakers throughout the day include -- Amy Comstock Rick, Ron Bartek, Elizabeth Hassett, MPH, Dominique Pichard, @AJ Allen, Kristin Schneeman, Pat Furlong, James Valentine, Marshall Summar, Michelle Campbell, Dominique Pichard, Ralph Hall, Joni L Rutter, Michelle Tarver, MD, PhD, Paul Melmeyer, Susan McCune, MD, Karin Hoelzer, Janet Maynard, Annie Kennedy, and more!

Last Day to Register for Rare Across America! Rare Across America 2024 is the opportunity to meet with your Members of Congress at their in-district offices and virtually to educate them on the issues that are most important to the rare community by sharing your story.  Register for Rare Across America Here: https://lnkd.in/e-ZapumJ Where? All Senate meetings will be scheduled virtually and House meetings will be in person at your Member’s in-state, in-district office. Rare Disease Legislative Advocates (RDLA) will schedule meetings for you and help you to prepare. No prior advocacy experience is necessary. When? Meetings with Members of Congress will take place between August 5th and August 16th, and will be scheduled based on your availability. We will be offering training webinars to help advocates prepare for their meetings.  July 16, 12pm-1pm ET: General Training Webinar July 24, 12pm-1pm ET: Team Coordinator Training Webinar: Meetings with 5 or more advocates will have an assigned Team Coordinator to organize the meeting agenda. A Team Coordinator is an advocate who has participated in the event before! Interested in this role? Be sure to volunteer when you register. A link to attend this training will be sent to all confirmed Team Coordinators.  July 25, 12pm-1pm ET: Share Your Story with Policymakers Webinar

Nominations for the #RareVoiceAwards2024 are now open! This year marks the 13th year of the RareVoice Awards hosted by the EveryLife Foundation's Rare Disease Legislative Advocates (RDLA) program. This celebration honors advocates who help amplify the voice of the rare disease community in policy in the states and on Capitol Hill.   We encourage the community to nominate individuals and organizations who have gone above and beyond as rare disease leaders, having passed or catalyzed legislation for the rare disease community in 2023 and/or 2024. Have anyone in mind? Nominate them here: https://lnkd.in/efYTQMzz #rarevoice #raredisease #policy #capitolhill

🎉 Exciting Newborn Screening Update! Today we are celebrating a life-saving advancement! The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) added Krabbe Disease to the federal Recommended Uniform Screening Panel (RUSP)! This is a significant milestone for public health, promising opportunities for more timely interventions and brighter futures for affected children with this rare disease. Today we congratulate all those who worked so hard to make today's vote possible. But most especially, we recognize and honor the #Krabbe community. KrabbeConnect Hunter's Hope Foundation Leukodystrophy Newborn Screening Action Network   To learn more about newborn screening visit: https://bit.ly/3mSQQYo #ACHDNC #Krabbe #newbornscreening #raredisease #RUSP

One week left to register for this unique opportunity #RareAcrossAmerica2024 Meet with your Members of Congress at their in-district offices and virtually to educate them on the issues that are most important to the rare community by sharing YOUR story. Meetings with Members of Congress will take place between August 5th and August 16th, and will be scheduled based on your availability. We will be offering training webinars to help advocates prepare for their meetings. Ready to make a difference? Register today: https://bit.ly/42zU5oZ Leah Campbell

🌟 Exciting News for the Rare Disease Community! 🌟 As we approach the 4th of July holiday, we’re eager to share that our community’s collective advocacy is working. In the last few weeks, FDA leadership has publicly spoken of plans to establish a 'rare disease hub' — a step forward that mirrors the structured approach the EveryLife Foundation has advocated for years. We are eager to work alongside our rare community and FDA leadership to ensure this initiative is more than symbolic—that it is a robust framework that truly serves our community. While many more details are still to come, know that we are United. Amplified. Stronger than Ever. Check out the EveryLife Foundation’s 'rare disease hub' statement: https://bit.ly/4czqZvD Learn more about the FDA Center of Excellence visit: https://bit.ly/RDCOE #RareDisease #HealthcareInnovation #FDA #4thofJuly #policy

REMINDER: Today is the last day the complete the Pride in Rare survey‼️ Thanks to everyone who completed the survey or shared it with their community. This program is possible because of you! Together, we'll shape Pride in Rare and bring awareness to this important movement. As we close out Pride month, I'd like to encourage you to embrace every month as Pride month and remember that you're loved. 🏳️🌈🏳️⚧️🫶🏽 #PrideinRare #raredisease #representationmatters

Rare Giving applications are now open! Rare Giving grants support for event sponsorships for conferences, Patient-Focused Drug Development meetings, and tools and resources for 501(c)3 non-profits to enhance patient advocacy and policy engagement. Apply Now! https://hubs.li/Q02DCkyr0 #RareGiving #PatientAdvocacy #RareDiseases #RareGiving

See what Rare Disease Advocate, Allison Bones, has to say about the Newborn Screening Bootcamp! #nbsbootcamp2024 will take place on September 17 in Atlanta, GA. To learn more about this free in person event please visit: https://hubs.li/Q02Dtghz0

🌟 Don't miss our next webinar this Thursday, June 27th, 2024, 12-1pm ET! Join young advocates and experts from the #raredisease community. Speakers include: Charlotte Chance, Young Adult Advocate Lonnie Lu Rivera, Young Adult Advocate Dylan Simon, EveryLife Foundation for Rare Diseases Dr. Laura Tosi, OI Foundation Lisa Facciolla & Jess Myers, Hereditary Angioedema Association Courtney Felle, EveryLife Foundation for Rare Diseases Let's talk youth-focused legislation advocacy! Register here: https://hubs.li/Q02Dh7qT0