EveryLife Foundation for Rare Diseases
@everylifeorg.bsky.social
We empower the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.
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/
‼️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...
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
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...
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...
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
📣 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...
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
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
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
📣 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...
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.
