@RareAction profile picture
Rare Action Network @RareAction

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

Joined June 2016
  • Tweets 1,360
  • Following 281
  • Followers 2,571
496 Photos and videos
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
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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: rarediseases.quorum.us/campa…

Rhode Island S2468/H7539: Protect Patients from Barriers to Treatment

Step therapy, often referred to as “fail first,” is a practice in which insurers require patients to try one or more alternative medications chosen by their insurance provider before gaining access...

rarediseases.quorum.us
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🎉 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: rarediseases.quorum.us/campa…

VA SB 161/ HB625: Thank Your Lawmakers for Supporting HB 625/ SB 161

SB 161/HB 625 has been signed by Governor Spanberger!

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🚨 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: rarediseases.quorum.us/campa…

Rhode Island S2468/H7539: Protect Patients from Barriers to Treatment

Step therapy, often referred to as “fail first,” is a practice in which insurers require patients to try one or more alternative medications chosen by their insurance provider before gaining access...

rarediseases.quorum.us
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🚨 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: rarediseases.quorum.us/campa…

Missouri HJR 154: Constitutional Amendment for Medicaid Work Requirements

HJR 154 is a Joint Resolution that, if passed by the Missouri legislature, would place a ballot question before voters asking whether to add Medicaid work requirements to the state constitution.

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🏛️ 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: rarediseases.quorum.us/campa…

VA SB 161/ HB625: Thank Your Lawmakers for Supporting HB 625/ SB 161

SB 161/HB 625 has been signed by Governor Spanberger!

rarediseases.quorum.us
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🚨 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: youtube.com/channel/UCttFrXk… 🏛️⚖️ #RareDisease

Vermont Senate Committee on Health and Welfare

youtube.com
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🚨 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: rarediseases.quorum.us/campa… #RareDisease

Maryland HB1331: Protect Rare Disease Patients in Medicaid Work Requirements

Maryland's HB 1331 implements federally required Medicaid work requirements but leaves critical design choices — including how exemptions are defined — to the state.

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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: rarediseases.quorum.us/campa…

VA SB 161/ HB625: Thank Your Lawmakers for Supporting HB 625/ SB 161

SB 161/HB 625 has been signed by Governor Spanberger!

rarediseases.quorum.us
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🎉 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: rarediseases.quorum.us/campa…✍️ #RareDisease

New York S1287-B/A1296-B: Codify New York's Rare Disease Advisory Council

Through our Project RDAC initiative, NORD is working hard to secure the permanence of New York’s Rare Disease Advisory Council.

rarediseases.quorum.us
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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. rarediseases.quorum.us/campa…

VA SB 161/ HB625: Thank Your Lawmakers for Supporting HB 625/ SB 161

SB 161/HB 625 has been signed by Governor Spanberger!

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Virginia Advocates: SB 161 needs your support! Add your voice ➡️ rarediseases.quorum.us/campa… #RareDisease #PatientAdvocacy #VApol #SB161
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🚨 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! rarediseases.org/driving-pol…

Take Action - National Organization for Rare Disorders

Empower rare disease advocacy through strategic action steps, policy engagement, and community involvement. Discover how you can make a meaningful impact today.

rarediseases.org
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To learn what’s at stake, read NORD’s report on the impact of the PRV program on drug development: rarediseases.org/wp-content/…
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🚨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. rarediseases.org/driving-pol…

Take Action - National Organization for Rare Disorders

Empower rare disease advocacy through strategic action steps, policy engagement, and community involvement. Discover how you can make a meaningful impact today.

rarediseases.org
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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.
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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: bit.ly/3ST0XKV #healthcare #congress
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🚨 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: rarediseases.org/driving-pol…

Take Action - National Organization for Rare Disorders

Empower rare disease advocacy through strategic action steps, policy engagement, and community involvement. Discover how you can make a meaningful impact today.

rarediseases.org
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Big news for #California #RareDisease patients and families! Thank you to all the advocates who helped us pass this bill. x.com/RareDiseases/status/18…

National Organization for Rare Disorders (NORD)
@RareDiseases
29 Sep 2024
🎉 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! 🌟
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📢 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: bit.ly/3W1XQmK

Take Action - National Organization for Rare Disorders

Empower rare disease advocacy through strategic action steps, policy engagement, and community involvement. Discover how you can make a meaningful impact today.

rarediseases.org
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