Rare Action Network

Advocating at the state & federal level to improve the lives of the 30 million Americans with #RareDiseases. #RareAction: a #NORD (@RareDiseases) initiative.

[Rare Action Network @RareAction]

HUGE WIN in VT! 🎉
Gov Scott signed #H46 into law, creating Vermont’s first Rare Disease Advisory Council (RDAC)! A massive victory for the VT rare disease community. 💚💪 #VTRDAC #RareDisease

[Rare Action Network @RareAction]

RI patients shouldn’t have to "fail" on the wrong meds to get the care they need. ��💊

S2468/H7539 would end "Fail First" protocols for rare disease patients, but it’s STALLED in committee.

Urge RI leadership to act before time runs out: https://t.co/j27TpiIbR1

[Rare Action Network @RareAction]

🎉 BIG NEWS: Governor Spanberger signed SB 161/HB 625 into law! ✍️

This is a massive win for VA. Prescription drug copays will now be capped at $150–$300, making care predictable & affordable.

SAY THANKS: https://t.co/g7KUz6eFmW

[Rare Action Network @RareAction]

🚨 RI RAN: Let’s end "Fail First" protocols! 🚨

This Thurs, 4/16 the Senate hears S2468—our chance to stop insurers from overriding doctors.

✅ Bans Fail First for rare diseases ✅ Fast-tracks access

ACT NOW: https://t.co/j27TpiIbR1

[Rare Action Network @RareAction]

🚨 MISSOURI ACTION ALERT 🚨

Missouri’s HJR 154 could risk Medicaid coverage for rare disease patients by adding work requirements to the Constitution. We need protection that reflects the reality of living with complex medical conditions.

TAKE ACTION: https://t.co/WmFIjD6Jhj

[Rare Action Network @RareAction]

🏛️ MAJOR MILESTONE IN VIRGINIA! 🏛️

Thanks to you, SB 161 & HB 625 are heading to the Governor’s desk! A huge win for healthcare affordability.

The Governor needs to hear from YOU to get this over the finish line.

Take Action Now: https://t.co/g7KUz6eFmW

[Rare Action Network @RareAction]

🚨 Vermont RDAC Bill Update: H.46

The Senate Health and Welfare Committee is holding a preliminary walk-through of H.46 TODAY, 3/25, at 9:45 a.m. EST.

Watch it live here: https://t.co/nAPUvIvAZM

🏛️⚖️ #RareDisease

[Rare Action Network @RareAction]

🚨 MARYLAND ACTION ALERT 🚨

Maryland’s HB 1331 could risk Medicaid coverage for rare disease patients with fluctuating conditions. We need exemptions that reflect the reality of living with a rare disease. 🧬

TAKE ACTION: https://t.co/SDsdmKdGDN

#RareDisease

[Rare Action Network @RareAction]

SB 161 & HB 625 are officially heading to the Governor’s desk! 🏛️

This is a massive win for patients:
✅ Monthly drug costs capped at $150–$300
✅ Increased insurance transparency

Contact your lawmaker TODAY and thank them for their support: https://t.co/g7KUz6eFmW

[Rare Action Network @RareAction]

🎉 MAJOR WIN for NY! Legislation to codify the Rare Disease Advisory Council (S1287-B/A1296-B) has PASSED both Chambers! 🏛️

Now, we need @GovKathyHochul to sign it and secure a permanent voice for 1.8M New Yorkers.

📢 TAKE ACTION HERE: https://t.co/6wXjOSNJEZ✍️

#RareDisease

[Rare Action Network @RareAction]

Huge win, VA! 🏛️

Thanks to our advocacy, SB 161 and HB 625 have passed their original chambers and are heading to crossover!

Take action today and ask your law maker to require insurance companies to provide clear, upfront costs for patients in VA.

https://t.co/g7KUz6eFmW

[Rare Action Network @RareAction]

Virginia Advocates: SB 161 needs your support!

Add your voice ➡️ https://t.co/g7KUz6eFmW

#RareDisease #PatientAdvocacy #VApol #SB161

[Rare Action Network @RareAction]

To learn what’s at stake, read NORD’s report on the impact of the PRV program on drug development: https://t.co/i2nfnIQkvd

[Rare Action Network @RareAction]

🚨 HUGE WIN! 🚨 The House just passed the Give Kids a Chance Act (H.R. 1262), a big step for the Rare Pediatric Disease PRV Program which according to NORD's White Paper, has helped launch 63 new treatments!

➡️ NOW urge your Senators to support here! https://t.co/k0adJBCpBK

[Rare Action Network @RareAction]

@OhioSenateGOP The RDAC operates on nominal admin costs, just completed a productive 2-year cycle with members newly reappointed by @GovMikeDeWine. It provides critical infrastructure connecting patients, providers & policymakers - an active council that meets regularly & always makes quorum.

[Rare Action Network @RareAction]

🚨The Ohio Rare Disease Advisory Council (RDAC) is at risk! @OhioSenateGOP budget bill would eliminate the RDAC☹️. Still time to act - contact your Senator to preserve this voice for rare disease patients.
https://t.co/3nXA4PKr1e

[Rare Action Network @RareAction]

Congress is back in session! This is a great time to contact your elected officials and share your story to tell them why #RareDisease policy matters to you and your family! Reach out today, here: https://t.co/LWhJoJdsm0
#healthcare #congress

[Rare Action Network @RareAction]

🚨 Michgan! Time is running out! The RDAC bill (HB 4167) needs a vote in the MI Senate before the session ends. 📣 Help make it law to support rare disease patients in Michigan. Take action now: https://t.co/PTK6T5p3tr

[Rare Action Network @RareAction]

Big news for #California #RareDisease patients and families! Thank you to all the advocates who helped us pass this bill. https://t.co/QE7AKNz9kB

[National Organization for Rare Disorders (NORD) @RareDiseases]

🎉 It’s official! 🎉 Governor @GavinNewsom has signed AB2613 into law, making #California the 29th state to create a Rare Disease Advisory Council! This is a monumental victory for our #CA #RareDisease community. Thank you @RickChavezZbur & the advocates who made this happen! 🌟

[Rare Action Network @RareAction]

📢 Governor @GavinNewsom, we're counting on you! 📢 AB2613 (Zbur) to create an RDAC in CA is on your desk. This bill is crucial for our #raredisease community, and we urge you to sign it into law. Advocates, make your voice heard in support now: https://t.co/zlQWJ26wxo