Top Tweets for #rareact
BREAKING: The #RAREAct, which clarifies how to award orphan drug exclusivity from the #OrphanDrugAct is included in the end-of-year package from #Congress. Urge your elected officials to vote YES on this landmark law here: https://t.co/1HiF1xoTVs
Children with rare diseases deserve access to safe, effective treatments. We're encouraged to see the #RAREAct and #CreatingHopeReauthorizationAct advance and @HouseCommerce and @EnergyCommerce commit to resolving remaining differences to expand access to #RareDisease therapies.
The #RAREAct is a being voted on in today’s @HouseCommerce Health Subcommittee, which would cement FDA’s long-standing interpretation of how to award orphan drug exclusivity, an incentive established by the Orphan Drug Act. Urge your Rep. to support it: https://t.co/V1YFVtqYEe
The #RAREAct clarifies the original intent of the #OrphanDrugAct and codifies the FDA’s longstanding interpretation of how to award orphan drug exclusivity.
Learn more and check out the 78 patient orgs that support this bill: https://t.co/camLIQC1YT (2/6)
Tomorrow, @HouseCommerce will hold a markup on the #RAREAct, #AcceleratingKidsAccesstoCareAct, #CreatingHopeReauthorizationAct, and #TelehealthModernizationAct.
Tell your Rep. to support the #RareDisease community by supporting these bills, here: https://t.co/eZYJHa79ii 🧵
Happening now Rare Disease Congressional Caucus Co-Chair @DorisMatsui sheds light on the importance of supporting the #BENEFITAct, #RAREAct, #ProtectRareAct @EnergyCommerce @HouseCommerce watch here: https://t.co/GPzjqGmeAH
The #RAREAct is a critical piece of legislation being heard in today's #RareDiseaseDay hearing. It would protect a key drug development incentive established by the life-changing Orphan Drug Act. Tune in to the hearing here! https://t.co/hgnMUYbEDA
The #RAREAct is a critical piece of legislation being heard in today's #RareDiseaseDay hearing. It would protect a key drug development incentive established by the life-changing Orphan Drug Act. Tune in to the hearing here! https://t.co/OnXwyLx02y
This #RareDiseaseWeek, NORD wants to thank @RepGusBilirakis and @DorisMatsui for introducing the #RAREAct, which clarifies the intent of the #OrphanDrugAct and protects orphan drug development for children and other hard-to-study groups. Thank you, Reps. Bilirakis and Matsui!
On #RareDiseaseDay, Congress will hold a hearing on 18 #RareDisease bills, including the RARE Act, which codifies the #FDA’s longstanding interpretation of how to award orphan drug exclusivity. Protect the #ODA. Tell your Rep. to cosponsor the #RAREAct! https://t.co/N971SYWHe3
On #RareDiseaseDay, Congress will hold a hearing on 18 #RareDisease bills, including the RARE Act, which codifies the #FDA’s longstanding interpretation of how to award orphan drug exclusivity. Protect the #ODA. Tell your Rep. to cosponsor the #RAREAct! https://t.co/ZcmQ6gfZ5V
BREAKING NEWS: The #RAREAct (H.R. 7383) was introduced this week by Reps. @RepGusBilirakis and @DorisMatsui to clarify the intent of the #OrphanDrugAct and protect orphan drug development for children and other hard-to-study groups. Thank you Rep. Bilirakis and Rep. Matsui!
Thank you to @SenatorBaldwin and @SenatorBraun for championing the #RAREAct on behalf of patients and families living with rare diseases!
Today, in a decisive victory for the #RareDisease community, the Senate HELP committee passed the #RAREAct, which will ensure drug sponsors continue to study the safety and efficacy of orphan drugs in special populations like children. Read more here: https://t.co/EmIrLhQVq4
Earlier this week, TMS joined NORD (@RareDiseases) and more than 75 other rare disease patient advocacy organizations to call on Congress to pass the #RareAct. Read the letter here: https://t.co/IJVxLiW9hJ #mastcell
#tmsforacure
#mastcelldisease
#careaboutrare
#raredisease
NORD and 77 other patient advocacy groups thank @SenatorBaldwin and @SenatorBraun for championing the #RAREAct and for recognizing that all #RareDisease patients deserve safe and effective treatments!
Read our full letter and view the signatories here: https://t.co/sRcGXpl19L
We urge Congress to pass the #RAREAct, introduced on Friday by @SenatorBaldwin, which would ensure incentives remain in place for pharmaceutical companies to study the safety and efficacy of orphan drugs in special populations like children.
Learn more: https://t.co/EmIrLhQVq4
We would also like to thank the 84 organizations who joined NORD in urging Senate HELP leadership to incorporate the #RAREAct into the FDA Safety and Landmarks Advancement Act: https://t.co/BhVQFLnOdh
BREAKING NEWS: The HELP Committee advances S. 4348, the @US_FDA Safety and Landmark Advancements (#FDASLA) Act with @SenatorBaldwin’s #RAREAct amendment. Thank you Senator Baldwin for your amendment and commitment to the #RareDisease community!
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