Activating on state policies that ensure those with rare conditions get the care they need, when they need it. Social media guidelines bit.ly/3AzXLue

Joined January 2022
574 Photos and videos
We've accomplished some great things as a #RareandReady coalition 😎 HB433 is now law - lis.virginia.gov/bill-detail… Improving newborn screening processes - that's what we do! #RareandReady
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Sometimes we forget men are caregivers too. June is #MensMentalHealth Month - samhsa.gov/mental-health/wha… @US_FDA #MensHealthMonth #RareandReady

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Burnout, depression, stress, anxiety - that stuff is REAL! Guys there is no need to suffer in silence like it’s a badge of honor. Do the right thing and take care of your mind the same way you take care of everything and everyone depending on you. samhsa.gov/mental-health/wha… #MensHealthMonth #MensMentalHealth
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#RareandReady is now on LinkedIn - linkedin.com/company/rare-re… New space, same mission – improving access to care for those impacted by rare and genetic conditions. Follow us and help amplify patient voices!
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It is True or False Tuesday! On this International #BattenDisease Awareness Day, we are going to test your knowledge! Thanks for all you do @JujuandFriends @afs4batten @taylorstale @BDSRA #RareandReady
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Register for the @everyoneiswe LEAP Advocacy Summit: theewefoundation.org/leapsum… #RareandReady
⏰ The countdown is on! Only 23 Days Until LEAP Summit 2026! Join participants from around the world for the 2026 LEAP into Advocacy Summit. LEAP offers a unique opportunity to learn, connect, and drive meaningful change. 🔗 Register today: theewefoundation.org/leapsum…
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DYK? June is Myasthenia Gravis Awareness Month. Learn more and raise awareness with the MG Awareness Month Toolkit from #RareandReady Coalition member @myastheniaorg. bit.ly/MGAMToolkit
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PDAB legislation was introduced in several states this year! Download 📩 slides from webinar with @cfunited2023 and @RoadmapToCF to learn more about PDABs. bit.ly/3xuOG52. #RareandReady
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Take action on the federal #SafeStepAct: bit.ly/StepAct. #RareandReady
Your voice matters! Join hundreds of advocates today and call your lawmakers in Congress telling them that #steptherapy risks individuals’ well-being and we need reforms. Urge them to co-sponsor the #SafeStepAct and bring these needed reforms to Americans. bit.ly/StepAct
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120…we are 120 #RareDisease organizations strong! Together, we're amplifying voices and driving change in the rare disease community. United, we’re unstoppable. Join us at rareandready.org #RareandReady
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This #MemorialDay, we honor our fallen heroes as well as the unsung warriors fighting rare diseases. Their strength 💪and resilience inspire us all. Let’s celebrate every act of bravery. #RareandReady
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Legislation #RareandReady advocated on this year. ➡️IL SB 3049, VA HB 433, MD HB 1625: newborn screening ➡️CA AB 1887, WI AB 432: prior auth/step therapy ➡️CO SB26-140, IL HB 1443, HI SB 2933: PDABs ➡️CA AB 1798: genetic testing & insurance
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Don't miss this webinar, tips for your next ER visit, from @bdcouncilca on 5/27 at 6:30pm PT. Register at: bdcouncilca.org/event/overco… Dr. Tomlinson will tailor her advice to people with bleeding disorders and other rare diseases to ensure the best possible outcomes at the ER. #RareandReady
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DYK? #RareandReady submitted written testimony for several bills this year. Learn more about our advocacy & check out our letters at: rareandready.org/take-action…
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Today on International MPS Awareness Day we recognize our coalition members @mpssuperhero @MPSSociety. Thank you for all you do! #RareandReady
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Join us this Friday at our NORD® Living Rare, Living Stronger® event in #Denver, #Colorado for conversations on improving your #RareDisease care and overcoming insurance barriers. Free for patients and families! Featuring speakers from @CUAnschutz, @CUDenver, @ChildrensColo and @MSUDenver. RSVP at livingrare.org/colorado.
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May is Prader-Willi Syndrome Awareness Month! Play the video to hear from @KatieMoureau about #PWS. We thank Katie and @PWSAUSA for their commitment to the #RareandReady coalition!
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