Top Tweets for #RareAndReady
Help us celebrate Pennsylvaniaโs rare disease community! A PA artist, Mary Sott, is a 2026 #RAREArtist finalist w/ "I Am Still Me". Read their story & cast your vote to support rare disease voices through art!
๐ณ๏ธ https://t.co/tFowwwr0Ma
#PaRare #RareDisease #Pennsylvania
Are you going to @RareDiseases #NORDSummit? Drop us a comment and tell us what you hope to learn this year. #Advocacy #RareDisease #RareandReady
While we enjoy the cozy flavors of the season, letโs remember that for millions living with rare diseases, every season comes with unique challenges.
Add some pumpkin spice to your life! #RareDisease #PumpkinSpiceSeason #RareandReady
Sesame-crusted Sakura tuna, sliced rare, with the avocado still sitting on the board. Clean, sharp, and ready to plate.
#SakuraTuna #SesameCrustedTuna #TunaTataki #SearedAhi #ChefLife #FromTheBoard #RareAndReady #KitchenFirst #PhoenixEats #ArizonaChef
A few drops of blood can make a lifetime of difference. This #NewbornScreeningAwareness Month, letโs celebrate the simple tests that help give babies the healthiest possible start. ๐ #RareandReady
Join us on 9/9 to discuss โBuilding a Path to Successful Newborn Screening Implementation in Virginia.โ
Register at https://t.co/gike4gcULJ
#RareandReady #NewbornScreening
ACTION ALERT! DYK about Prescription Drug Affordability Boards (PDABs)?
They aim to lower drug costs but hinder rare disease research & limit access to new treatments, especially for rare disease patients. Ensure your voice is heard! โก๏ธhttps://t.co/4u7LUIBa7X #RareandReady
The @RareDiseases #NORDSummit is in full swing! Visit us at Booth 23 to learn about important state legislation!
#Advocacy #RareDisease #RareandReady
@EachPic released their findings of their Patient Experience Survey: Prescription Drugโ
Affordability and Unaffordability - https://t.co/pZru8mSBo2.
#PDABs arenโt helping patients. @IFAiArthritis #RareandReady
We support Give Kids a Chance Act, introduced Feb 2025 by @RepMcCaul to extend the FDA Rare Pediatric Disease Priority Review Voucher program through 2029.
Learn more from @EveryLifeOrg at https://t.co/LHZR50W02O
#RareandReady
Thanks for visiting our #RareandReady @WiRareAlliance booth @repvos!
If you are at @NCSLorg this week. Come & see us! #NCSLsummit
July 22 is Fragile X syndrome awareness day. By lighting up landmarks and monuments around the world, the hope is to shine light on the need for research and a cure. #RareandReady #FragileX @FRAXAresearch @NFXFoundation
Don't miss @EveryLifeOrg @RareAdvocates webinar on the impact of the One Big Beautiful Bill Act. Link to recording below. #RareandReady #Advocacy
The recording of this month's RDLA Webinar, H.R.1 (One Big Beautiful Bill Act) & What it Means for Rare Diseases, is now live on our Youtube Channel.
๐ Watch the full recording here: https://t.co/8KCc5JMtzu
Do you know what today is? International #BattenDisease Awareness Day! We are working with our friends in the #RareandReady community to spread awareness. Thanks for all you do @JujuandFriends @afs4batten @taylorstale @BDSRA @Philip_Palermo @AmbitioninLif
Donโt miss our webinar tomorrow! Join us with @cfunited2023 and @RoadmapToCF to learn how PDABs impact access to life-changing therapies and how we can advocate for change. Still time to register at: https://t.co/NHfyN1NSEE. #RareandReady #PDAB
We stand united for #RareDiseaseDay, a global movement amplifying the voices of those facing the extraordinary challenges of rare conditions. Every story matters. @NORD @rarediseaseday #ShowYourRare #RareandReady
This #RareDiseaseDay, read the stories behind the faces on @RareDiseases #FacesOfRare wall. Add your own photo celebrating yourself or a loved one, living or in memory, here: https://t.co/6rUj6TBAzN #ShowYourStripes #RareDisease #RareandReady
Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: https://t.co/md2rKXhi2T
#ShowYourStripes #RareDisease
Register for #RareDiseaseDay on Feb. 27โ28 with @ncats_nih_gov @US_FDA. RSVP now: https://t.co/QEsPH1a2Fw
#RareandReady @RareDiseases
Mark your calendars for #RareDiseaseDay on Feb. 27โ28!
@ncats_nih_gov & @US_FDA are teaming up for a two-day, hybrid #RDDatFDANIH event! RSVP now to listen and engage with panel discussions, #RareDiseases stories, and more: https://t.co/Qmc5Pvy5VN
#FDA #NIH
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