Top Tweets for #StaTact
Light up for rare! #Louisville @LouisvilleMayor #BigFourBridge #ListenTour 💜 We invite you to learn more about #RareAdvocacy in our Community and why it’s important to the many families living with rare. #newbornscreening #mnea #statact @sportssammy05 @rarelikeher @PatientWorthy
✨There are many different kinds of events you can organise for #RareDiseaseDay!
👉 Light up monuments and buildings: https://t.co/GgRAeYT43G
👉 Light up your home: https://t.co/JbjkAFyvkO
👉 Post your event: https://t.co/YtJBWJYHAQ
👉 Events near you: https://t.co/eyzxAg69fA
RDLA Webinar: End-of-Year Policy Efforts and Updates https://t.co/E1L9IoUz9M #RareDisease #STATAct #PDUFA #BENEFITAct @RareAdvocates
From the event that was held on MBS Day 2022. Extending our sincere gratitude for those who managed to visit us.
#StatAct
RARE NEWS BULLETIN: Watch this video for an update from EveryLife’s Annie Kennedy on the Prescription Drug User Fee Act (#PDUFA). https://t.co/bJKwFHmtyA
Today marks another milestone for this critical legislation! #STATact #RareDisease #RareAcrossAmerica
Check out the four pillars of the #STATAct as explained in these creative limericks authored by young adult leaders from @nextstepfund and the Young Adult Representatives of RDLA (YARR)!
Help support the #STATAct and share these with your community! https://t.co/C5Z6fJJKQU
Starting Now! The inclusion of the #STATAct (HR 1730 / S 670) in this hearing signals continued momentum for the bill which aims to pass targeted and impactful policy reforms at the Food and Drug Administration (FDA).
Watch LIVE here https://t.co/pvCATjuPjR
Happening Today - The #StatAct is expected to be among key rare disease community legislative priorities discussed during the U.S. Senate Committee on Health, Education, Labor & Pensions hearing today, April 5th at 10:00 a.m.
Watch LIVE here https://t.co/pvCATjuPjR
On behalf of the 25-30 million Americans 🇺🇸! That’s 1/10 … or 1/4 on every elevator … 4/10 on every bus … Thank you @RepJohnYarmuth !! @RareAdvocates @sportssammy05 @EveryLifeOrg #statact
Advocates, your actions are making a difference! Let's keep the momentum going! Take a minute to ask your members of Congress to cosponsor the #StatAct and stand with the more than 30 million Americans living with rare diseases who need therapies.. 1/3
Thank you, @GKButterfield and @RepGusBilirakis, for your leadership on the #STATAct, a bill in front of the @energycommerce committee today. Time is the most precious commodity for rare disease community and this bill aims to speed therapies and reduce barriers to access.
Thank you to Arizona @RepOHalleran for co-sponsoring the #STATAct, and to his Legislative Director Adam Finkel for presenting our request to the Congressman!
Thank you to the new #STAT Act, co-sponsors for their support! Congressman John Yarmuth, Representative Tom O'Halleran Representative Madeleine Dean U.S. Representative Cindy Axne Congressman Sanford Bishop Congressman @RepSwalwell
Promising clinical trials may bring lifesaving therapies to patients like Clara. The #STATAct would help ensure patient access to therapies once they are approved.
Please take a minute to ask your members of Congress to co-sponsor the STAT Act today! https://t.co/tRadu9pI6n
Are you meeting with your federal legislators any time soon? Ask them to co-sponsor the #STATAct to help improve the development of & access to rare disease drugs and treatments. #cosponsor #policy #sicklecell
Thanks to the tremendous momentum created by #raredc2022 and the 370 meetings between rare disease advocates and their members of Congress, the STAT Act will be discussed in a Congressional hearing
Ask your members of Congress to co-sponsor the #STATAct https://t.co/tRadu9pI6n
Please ask your members of Congress to co-sponsor the #STATAct! This legislation will save lives and drastically improve the quality of life of people like me living with rare disease!
Thanks to the tremendous momentum created by #raredc2022 and the 370 meetings between rare disease advocates and their members of Congress, the STAT Act will be discussed in a Congressional hearing
Ask your members of Congress to co-sponsor the #STATAct https://t.co/tRadu9pI6n
Thanks to the tremendous momentum created by #raredc2022 and the 370 meetings between rare disease advocates and their members of Congress, the STAT Act will be discussed in a Congressional hearing
Ask your members of Congress to co-sponsor the #STATAct https://t.co/tRadu9pI6n
Check out this must-read article about the Speeding Therapy Access Today Act (#STATact) by Carter Hemion in @SeattleGayNews: https://t.co/LsjfYa0Nsb Carter is one of nearly a thousand advocates who recently participated in #RAREDC2022 to advance rare disease policies.
El Director Nacional del INE, @ivanojedapy y técnicos de la institución mantuvieron una reunión virtual con representantes de @UNITAR para conversar sobre la herramienta #StaTact.
📎 https://t.co/7Tc8QyjhZK
The #STATAct would spur the development of therapies for patients like Harlie who have ultra-rare diseases.
What did Erika, a rare disease patient for 37 years, tell members of congress during Rare Disease Week? Her story is one of the more than 30 million reasons we need Congress to pass the #STATAct.
https://t.co/iWUpaSTfli
Appreciate all of the #RareDisease advocates meeting with their representatives for #RareDiseaseWeek.
Thank you to our Idaho congressmen & staff for taking time to meet with us as we work together to bring an end to rare disease! #RareDC2021
#idleg #idpol #Idaho #Mito #StatAct
“We are not statistics. We are people. And we need therapies STAT” - Yes, Jaime!
Looking forward to the meetings next week with legislators nationwide, including here at home in #Idaho, where we will share our stories & advocate for #RareDisease & the #StatAct.
#RareDC2021
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