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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 17/12/2025

Tonight, the Senate attempted to pass the Give Kids a Chance Act (S. 932); unfortunately, that vote failed. To learn more about engaging with your Senators to support reauthorization of the PRV Program, and to access shareable resources, please visit everylifefoundation.org/prv/

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 01/12/2025

‼️The House of Representatives has passed the Give Kids a Chance Act (H.R. 1262)‼️ You made this happen! To learn more, visit our website ➡️ everylifefoundation.org/the-everylif... Tell your Senator to support the Give Kids a Chance Act now ➡️ everylifefoundation.quorum.us/campaign/110...

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 29/10/2025

The EveryLife, Every Action year-end campaign highlights how advocacy, evidence-based policy, and community partnerships fuel momentum even in challenging times. Visit our campaign page to learn more and hear advocates' stories: t.co/sIKKPVrnhp t.co/LnzDAdcps8

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 17/09/2025

The Energy and Commerce Committee voted to advance the Give Kids a Chance Act, which would reauthorize the PRV Program! This markup signifies important progress. You can still make a difference, support the reauthorization of the PRV program here: everylifefoundation.quorum.us/campaign/110...

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 11/09/2025

The EveryLife Foundation for Rare Diseases is honored to co-lead 190 patient advocacy organizations in urging Congress to pass the Give Kids a Chance Act. Now is the time for Congress to #RenewPRV and help find #Cures4Kids. Read the letter here: everylifefoundation.org/wp-content/u...

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 02/09/2025

September is Newborn Screening Awareness Month, and we have a full calendar of opportunities for you to learn and engage! 👉 To register and find more details visit our events calendar here: everylifefoundation.org/events-sched... #newbornscreening #awarenessmonth #nbs #policy #raredisease

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 31/07/2025

📣 As Congress makes important decisions today about funding health programs like biomedical research, we want to share the testimony that the EveryLife Foundation has submitted for consideration. Read the full testimony 👉 everylifefoundation.org/wp-content/u...

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 27/06/2025

This week, Congress continues their work on budget reconciliation. As the Senate considers passing major cuts to Medicaid, there's still time to share your Medicaid story. To learn more about how YOU can take action, visit: bit.ly/42swSIm #IAmMedicaid #RareDisease

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Reposted by EveryLife Foundation for Rare Diseases

KFF @kff.org · 25/06/2025

If Congress passes the reconciliation bill with the Senate Finance provision, 22 states could be required to reduce their provider taxes on either hospitals or managed care organizations, cutting a key source of state Medicaid funding in those states: on.kff.org/3I0KN0h

KFF map of the U.S. showing states with hospital or managed care organization provider taxes in excess of 3.5% of net patient revenues in SFY 2024 that have also adopted the ACA expansion. The map shows the Senate reconciliation bill could decrease revenues from provider taxes on hospitals or managed care organizations in 22 states.

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 25/06/2025

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EveryLife Foundation for Rare Diseases @everylifeorg.bsky.social · 25/02/2025

📣 Calling all rare disease community members. #RareDC2025 Sign this petition urging Congress to continue their support of steady and robust federal agency leadership, federal biomedical research funding, and public health agency resources. Take action: everylifefoundation.quorum.us/campaign/111...

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Reposted by EveryLife Foundation for Rare Diseases

Laura Packard @laurapackard.com · 29/01/2025

In Richmond Virginia today to advocate for patients w/ @everylifeorg.bsky.social for #StateAdvocacyDay, talking to @ebpforva.bsky.social & Sen. Adam Ebbin's staff about HB1782 on screening newborns for rare diseases, HB2099/SB1215 fighting prior authorization & HB1725 fighting medical debt.

Smiling, standing with my state delegate Elizabeth Bennett-Parker

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