#CreatingHOPEReauthorizationAct - Twitter Hashtag

over 1 year ago

Every day Congress delays renewing the #PRV is another day parents worry about finding a cure for their children. Tell your Senator to ACT NOW! Take Action: https://t.co/ymMhG3Nkpg #Cures4RareKids, #CureKrabbe, #CreatingHopeReauthorizationAct

EveryLifeOrg's tweet photo. Every day Congress delays renewing the #PRV is another day parents worry about finding a cure for their children. Tell your Senator to ACT NOW!

Take Action: https://t.co/ymMhG3Nkpg
#Cures4RareKids, #CureKrabbe, #CreatingHopeReauthorizationAct https://t.co/B0WtSYHZjD

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Kids V Cancer

@KIDSvCANCER

over 1 year ago

We are off to a great start . 100 youth advocates are having meetings on the Hill advocating for the #GiveKidsAChanceAct and the #CreatingHopeReauthorizationAct. Wish us luck!

KIDSvCANCER's tweet photo. We are off to a great start . 100 youth advocates are having meetings on the Hill advocating for the #GiveKidsAChanceAct and the #CreatingHopeReauthorizationAct. Wish us luck! https://t.co/0H5pZZZnya

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The Dion Foundation @DionFund

about 2 years ago

Thank you @cathymcmorris for sharing our story #energyandcommercecommittee and @RepLoriTrahan for your work on HR 7384 #creatinghopereauthorizationact to help children like Peter & Maggie living with rare pediatric diseases 🙏🏻

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National Organization for Rare Disorders (NORD)

@RareDiseases

about 2 years ago

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.

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National Organization for Rare Disorders (NORD)

@RareDiseases

about 2 years ago

#PRVs helped bring 50+ new therapies for 39 diseases to the market for children with #RareDiseases. The #CreatingHopeReauthorizationAct would reauthorize this program, incentivizing new orphan therapies for kids. Urge your Rep. to support this bill: https://t.co/ebKGUgF7Zl

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National Organization for Rare Disorders (NORD)

@RareDiseases

about 2 years ago

Many rare pediatric diseases do not have a treatment, but thanks to #RareDisease PRVs, 35+ rare pediatric patient communities now have safe and effective treatments. The #CreatingHopeReauthorizationAct would reauthorize this program to keep these incentives in place. (3/6)

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National Organization for Rare Disorders (NORD)

@RareDiseases

about 2 years ago

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 🧵

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National Organization for Rare Disorders (NORD)

@RareDiseases

over 2 years ago

This #RareDiseaseDay the #CreatingHopeReauthorizationAct will be discussed along with 18 other #RareDisease bills. Reach out to your Rep with this action alert and urge them to reauthorize the Creating Hope Reauthorization Act by the September 30 deadline! https://t.co/ZcmQ6gfZ5V

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