Rare Action Network

🚨 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/campaign/15676… #RareDisease

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/campaign/15395…

🎉 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/campaign/15453…✍️ #RareDisease

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/campaign/15395…

Virginia Advocates: SB 161 needs your support! Add your voice ➡️ rarediseases.quorum.us/campaign/15395… #RareDisease #PatientAdvocacy #VApol #SB161

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

🚨 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-policy…

@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.

🚨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-policy…

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

🚨 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-policy…

Big news for #California #RareDisease patients and families! Thank you to all the advocates who helped us pass this bill. twitter.com/RareDiseases/s…

📢 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

🎉 Another win for #California! 🎉 The Assembly has officially concurred in the amendments to AB2613 (Zbur), and now RDAC legislation is heading to the Governor’s desk. A huge thank you to all the advocates, we’re so close to the finish line! 🌟 #RDAC

Help us make history! HB 4167, to establish a Rare Disease Advisory Council in Michigan, has passed the House & Senate Health Committee. It’s almost law! 📜 Let’s get it across the finish line by asking our Senators for a vote. #MIHealth rarediseases.org/driving-policy…

🎉 Great news, #California RDAC Advocates! 🎉 AB2613 (Zbur) has passed the Senate and is headed back to the Assembly for their approval. Thank you for your tireless efforts to make this happen. Together, we're making a difference! 🙌 #RDAC

#Arkansas Rare Action Network (RAN) members are invited to join us in-person at the State Capitol on Saturday, September 28 from 10:30 a.m. to 2:00 p.m. for a #RareDisease advocacy workshop! New volunteers welcome. Register here: bit.ly/4dMv9jF

Attn CA Advocates! AB2613 has passed out of Senate Appropriations Committee and moves on to the full Senate! California's RDAC is one step closer to a reality. Thank you to @RickChavezZbur for your commitment to the rare disease community in California! 💪

🚨 CALL TO ACTION 🚨Michigan advocates! HB 4167 needs YOUR help. This bill to create a Rare Disease Advisory Council just needs a final Senate vote! 🏛️ Contact your Senator NOW & urge them to prioritize this crucial bill. #RareDisease #Mipol #mileg rarediseases.org/driving-policy…

CALIFORNIA: #RareDisease advocates are at the Capitol in Sacramento meeting lawmakers right now urging action on #AB2613 to create an RDAC in CA! Even at home, you can still take action with them. Your voice matters! Write to your #California Rep. here: rarediseases.org/driving-policy…