Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.

Washington, DC
Joined December 2009
EveryLife Foundation retweeted
The EveryLife Foundation for Rare Diseases @EveryLifeOrg is excited to invite families to apply for travel stipends to attend Rare Family Day 2026 on October 3. Apply for a travel stiped before June 26th! zurl.co/1OEfc
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EveryLife Foundation retweeted
LISTEN: Annie Kennedy from @EveryLifeOrg shares the heartbreaking reality of how bureaucracy blocks lifesaving care those with rare diseases. It’s time to cut through the red tape & deliver SAFE RESULTS so more Americans with rare diseases can grow up & grow old.
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EveryLife Foundation retweeted
Thank you to the Women in Government Leadership & Innovation Summit for a co-sponsored discussion by Neurocrine Biosciences and @ultragenyx on the challenges and opportunities across the rare disease journey, from diagnosis to transitions of care. The conversation was moderated by California State Assemblymember Diane Dixon with panelists and experts in the rare disease community – Kimberly Haugstad from @RareRising_Org and Jamie Sullivan from @EveryLifeOrg for Rare Disease. The conversation explored how state leaders can create meaningful impact by elevating the voices of rare disease patients and families in policymaking. Thank you to all involved who helped make this discussion possible. #LIS2025
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EveryLife Foundation retweeted
Don't miss @EveryLifeOrg @RareAdvocates webinar on the impact of the One Big Beautiful Bill Act. Link to recording below. #RareandReady #Advocacy
The recording of this month's RDLA Webinar, H.R.1 (One Big Beautiful Bill Act) & What it Means for Rare Diseases, is now live on our Youtube Channel. 🔗 Watch the full recording here: hubs.li/Q03xms-c0
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EveryLife Foundation retweeted
As the Senate debates federal cuts to Medicaid, state-level data on coverage, eligibility, and financing helps put the stakes in context. KFF’s updated Medicaid fact sheets have the latest numbers for all 50 states: on.kff.org/StateFactsMedicai…
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EveryLife Foundation retweeted
Happening Today! Let’s talk about Newborn Screening at the Rare Disease Congressional Caucus Briefing. Join us at the Dirksen Senate Office Building, Room G11, Washington, D.C. at 12-1pm ET. To register visit: share.hsforms.com/1zE67FfxvS…
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Important work from our colleagues at NEWDIGS at Tufts Medical Center + the EveryLife Foundation sheds light on the future of pediatric rare disease treatments. The outlook shows real potential, but also a critical need to accelerate progress. #RareDisease #TuftsMedicine
📣 New Study Projects Future of Approvals, Patients Treated, Costs, and Gaps in Treatment Options. The EveryLife Foundation and @TuftsMedicalCtr published new research in the Journal of Managed Care & Specialty Pharmacy (JMCP) that provides insights into the future of treatments for rare diseases that start in childhood. Despite relatively few rare disease approvals each year, payers and policymakers portray a different picture warning of a “tsunami” of new therapies and unsustainable costs. As this study shows, that’s not the case. Check out the findings and how can the data be utilized -> everylifefoundation.org/newd…
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EveryLife Foundation retweeted
Medicaid makes a difference for so many families—and your story can help protect it. In collaboration with @EveryLifeOrg and rare disease advocacy groups around the United States, FAST and @angelman invite you to share your #IAmMedicaid story to Congress.
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EveryLife Foundation retweeted
Join @EveryLifeorg's upcoming RDLA Webinar on April 22 at 1PM ET where they'll discuss the first 100 days of this Congress and Administration, the impact on health care, and current rare disease landscape. us02web.zoom.us/webinar/regi…
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EveryLife Foundation retweeted
The advocacy effort on Capitol Hill for Rare Disease Week in late February was both educational and uplifting, says columnist Hollie Amadio. bit.ly/4iXmWf7 #Angioedema #AngioedemaAwareness #AngioedemaFighter
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EveryLife Foundation retweeted
We are in an unprecedented moment of attacks on science — and that includes attacks on @NIH.   NIH-funded research impacts all of us — bringing solutions to our most pressing problems and training our next generation of scientists. 

We cannot stand idly by while an unelected billionaire dismantles a carefully constructed research ecosystem. This is unacceptable.
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Attacks on the Department of Health and Human Services put Americans’ lives and livelihoods at risk. As we mark Rare Disease Day today, we must fight to lower the cost of healthcare for Americans, not threaten health care with mass layoffs of critical health care staff.
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EveryLife Foundation retweeted
As we recognize Rare Disease Week 2025, we urge you to sign the petition to Congress and advocate for continued federal support of biomedical research, public health resources, and strong leadership for rare diseases. lnkd.in/exSBvSGA #RareDiseaseWeek2025 #RareDC2025
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EveryLife Foundation retweeted
Rare Disease Advocates Pushing Against Penny-Wise, Pound-Foolish Government Cuts ow.ly/3nC81060Eh4 #PinkSheet
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EveryLife Foundation retweeted
We are 30 million Americans strong! Urge Congress to continue their support of steady and robust federal agency leadership, federal biomedical research funding, and public health agency resources. ✍📨 Sign and share! everylifefoundation.quorum.u…
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EveryLife Foundation retweeted
📣 Calling all rare disease community members. Join a petition to Congress in honor of #RareDC2025 🗣️ On behalf of our nation’s rare disease community, this petition urges Congress to continue their support of steady and robust federal agency leadership, federal biomedical research funding, and public health agency resources. ✍📨 The Community’s letter will be sent to All Members of Congress on Rare Disease Day, Friday, February 28, so please take action and help spread the word: everylifefoundation.quorum.u…
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EveryLife Foundation retweeted
Received Congressional Ldrshp RareVoice Award 4 my work 2 support kids w exceptional needs including ACE Kids law + Accelerating Kids Access 2 Care Act + more Award was designed by 11 yr old artist from Boone Iowa
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EveryLife Foundation retweeted
⏰ 📢 Urgent Action Needed—PRV expires in one week from today, December 20! If you have not already contacted your 🇺🇸 U.S. Senators about the Rare Pediatric Disease Priority Review Voucher (PRV) Program, the time to act is now! ⌛️ The PRV is set to expire on December 20, and we need your help to ensure it continues! 🧬 This program has been vital for rare disease treatments (including Ipsen's Sohonos™). Learn more and use the tool at the link below to send a message to your U.S. Senators 🇺🇸 (House of Representatives approval is already done!) So if you live in the U.S., make your voice heard! You can send a message to your Senators and invite your friends and family to message their Senators too. 👉 Take action here: everylifefoundation.org/prv 💙 Learn more about the PRV Program from EveryLife Foundation: youtu.be/iaL0E0_5siM?si=Ufx5… @EveryLifeOrg #Cures4RareKids #PRV #RenewPRV #RareDisease #CreatingHopeAct
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EveryLife Foundation retweeted
Kicking off the Pennsylvania Rare Disease Advocacy Day with two PA star advocates sharing their advocacy journeys. @EveryLifeOrg @RareAdvocates @The_Brackbills #raredisease
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EveryLife Foundation retweeted
Thank you to @RepBradWenstrup @RepLCD @RepLucyMcBath @RepRaulRuizMD and all 218 sponsors for your support on the #SafeStepAct! Together, we’re making crucial strides towards better healthcare access for all. @SpeakerJohnson @virginiafoxx @EdWorkforceCmte @EveryLifeOrg
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