EveryLife Foundation for Rare Diseases

Come join our team and make change happen with and for rare disease patients and families!

Join us at the forefront of change! 🌟 In honor of Newborn Screening Awareness Month, our next Rare Disease Congressional Caucus briefing will be about innovating and strengthening the newborn screening program. Be a part of this important conversation! Speakers include: -Duane Clark, General Manager, Rare Disease, Sanofi -Erica Barnes, Executive Director, MN Rare Disease Advisory Council -Dennis Dietzen, Ph.D., Former President, Association for Diagnostics and Laboratory Medicine -Amy Gaviglio, MS, CGC, Public Health Genetics and Genomics Consultant, Connectics Consulting -Dylan Simon, Senior Director of Policy, EveryLife Foundation for Rare Diseases Click the link to register: https://lnkd.in/e_gm5rFN

Newborn screening legislation is essential to ensuring that all children receive the critical diagnosis care they need. As the FOX6 Milwaukee, WITI-TV article points out, the need for improvements is urgent. The EveryLife Foundation remains committed to advancing this life-saving policy in the next legislative session. https://lnkd.in/eyE5BEDx To learn more visit the EveryLife Foundation's newborn screening action center: https://lnkd.in/ez4CduDj #NewbornScreening #RareDisease #LegislativeAction #Wisconsin #nbs2024

❗ Reminder!! Today is the last day to register to be eligible for travel reimbursements! 🗣

👶 September is Newborn Screening Awareness Month #nbs2024 and there is no better time than now to show your support for one of the largest and most successful public health programs in the history of the U.S. We invite you to join us for any of the following free special events for patient advocates. 👉 Caucus Briefing (Sep. 10): https://lnkd.in/d3vCt3Ya 👉RDLA Monthly Webinar (Sep. 12): https://lnkd.in/euukiehw 👉Newborn Screening Bootcamp (Sep. 17): https://lnkd.in/ddq9kA2y Thank you to our #nbs2024 supporters! Sanofi Alexion Pharmaceuticals, Inc. Exact Sciences Kyowa Kirin, Inc.- U.S. Pfizer Sarepta Therapeutics Takeda Spark Therapeutics, Inc. Travere Therapeutics Ultragenyx Johnson & Johnson

Does your 501(c)3 organization need support for event sponsorships, Patient-Focused Drug Development meetings, or tools to enhance patient advocacy and policy engagement? Rare Giving grants are here to help! Rare Giving empowers organizations to engage diverse audiences and connect with patients, caregivers, and stakeholders from all walks of life. Don’t miss this opportunity to amplify your impact! Apply now and take your advocacy to the next level! https://lnkd.in/e7njqWGW

RDLA's State Advocacy Quarterly Webinar is happening Thursday, Sept. 12, from 2pm-3pm ET. This is not one you want to miss! Hear from amazing representatives in health policy about the evolving rules requiring patient and caregiver engagement for payer decision making and what this means for rare disease advocates. Speakers include: Jamie Sullivan, Vice President of Policy at The EveryLife Foundation Jennifer Graff, Co-Founder/Principal at Innov8 Health Policy Kelly Maynard, President/Founder at Little Hercules Foundation Register here: https://lnkd.in/dc9u4UnT

👉 We are hiring! The EveryLife Foundation is looking for an Associate Director of Policy Communications a State Advocacy Manager and a Rare Disease Legislative Advocates (RDLA) Intern. If you or someone you know might be interested please send them this information or tag them below! To learn more and apply visit our careers page here: https://lnkd.in/gEFB8FZ

We're hiring! If you or someone you know might be interested in joining the EveryLife Foundation team send them this information or tag them below 👇

Thank you to the 425 rare disease advocates from 49 states + D.C. who made their voices heard in 242 Congressional meetings during #RareAcrossAmerica2024 💪 Your passion and commitment are driving change and bringing hope to countless lives. Together, we're making a difference! 🙌