Jennifer Huron retweetledi
Reauthorization of rare pediatric disease priority review vouchers gets through House subcommittee, but more Democratic support will be needed to get it past the finish line. buff.ly/3wLVUov
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Jennifer Huron
723 posts
Jennifer Huron
@JenniferHuron
Reader, writer, communications, strategy. Passionate about advocacy @rarediseases. Sports enthusiast. Forget cats, the internet was made for corgis.
Katılım Haziran 2009
1.4K Takip Edilen340 Takipçiler
Jennifer Huron retweetledi
E&C Panel Punts On Votes For Two Rare Disease Drug Bills dlvr.it/T7091V
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Jennifer Huron retweetledi
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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Jennifer Huron retweetledi
On behalf of children with #RareDiseases and their caregivers, NORD strongly urges Congress to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program before the September 30, 2024 deadline. Learn more: bit.ly/4bCldZU
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Jennifer Huron retweetledi
#RareDiseaseDay is just 10 days away! 🦓
Looking for ways to #ShowYourStripes in your community? Download our playbooks for tips and tools on how to stripe out your school, work, and neighborhood: bit.ly/48lCgfX
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Jennifer Huron retweetledi
In honor of #RareDiseaseDay coming up, we invite you to join us on February 8 for a virtual discussion of strategies to raise awareness for #RareDiseases and advocate in your community!
Register for this Community Conversation: bit.ly/3SzoLEW
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“I am writing a book because there are so many incredible stories that need to be told, and so many people who need to hear (or read) them.” @kaleidoscoperar wants to hear from YOU! Details on how to participate in this exciting, powerful project: bit.ly/kaleidoscopera….
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Jennifer Huron retweetledi
If you’re in Boston on 10/28, come on out and support research @WendyKChung @BostonChildrens and see hero first responders take the ice to play for our hero #RareDisease kids!
kif1a.org/get-involved/e…
Luke Rosen@lukebrosen
Just when we thought the @KIF1A Boston hockey event couldn’t get any better! Today, the amazing @NHLBruins Blades the Bruin called and asked to spend time at the rink with #RareDisease families on 10/28 before he heads to @tdgarden for the B’s game! Join us on 10/28 at 1:45 @WarriorIceArena! Event info and tickets here: kif1a.org/get-involved/e… Thanks Blades!
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Jennifer Huron retweetledi
More than half of U.S. states now have Rare Disease Advisory Councils to advance the needs of their #RareDisease communities.
NORD is proud to host representatives from around the country at our special #RDAC meeting before tomorrow's #NORDSummit!
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Jennifer Huron retweetledi
Calling all #RareDisease patients, caregivers, and allies in #Michigan!
A majority of states have now created Rare Disease Advisory Councils - and it's Michigan's turn to join them. Make your support known. ⬇️
Rare Action Network@RareAction
Attn Michigan #RareAction Advocates! HB4167 to create a Rare Disease Advisory Council will be heard before the Michigan Senate Health Policy Committee on Wednesday 10/11 at 12:30 PM. Voice your support TODAY and ask Chair @Kevin_Hertel to advance the bill! bit.ly/3RTPsEq
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Jennifer Huron retweetledi
Unless Congress acts, the IRA threatens to unravel one of America's greatest medical and public policy success stories. trib.al/sqKB74l
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Jennifer Huron retweetledi
13 years ago this month, my son was diagnosed with brain cancer. I promised him that I would do everything I could to help kids with #ChildhoodCancer. It’s the only thing he asked us to do. Not to help him, but to help others. I would be grateful for a follow or a RT to spread awareness and honor his journey. 🙏🏻
Kechi, KS 🇺🇸 English
Jennifer Huron retweetledi
For #NationalPatientAdvocacyDay, read about Judy, a rare disease advocate in Hawaii with #IgANephropathy.
Judy's testimony before the #Hawaii legislature helped pass a law making it easier for residents with #RareDiseases to access out-of-state care: bit.ly/47C85BU
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Jennifer Huron retweetledi
“My hope is that we will have treatments for every rare disease community. That hope is alive because of the Orphan Drug Act”
-Kyle Bryant, Friedreich’s ataxia patient
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Jennifer Huron retweetledi
2022 marked several significant policy victories for people living with rare diseases, thanks to our advocates' tireless dedication. As we get ready for an advocacy-packed 2023, let’s revisit some highlights of what we accomplished together last year: bit.ly/3GAZKC7.
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Jennifer Huron retweetledi
On today's 40th anniversary of the #OrphanDrugAct, NORD is calling on all community members to come together, just as we did 40 years ago, to accelerate the next era of progress. We have the power to shape the future. Together, let's #ReimagineRare: bit.ly/3VKED5B
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Jennifer Huron retweetledi
Have a resolution to get moving & want to make it more meaningful? Join a walk, run, wheelchair race, & fundraise for NORD through the Running for Rare…Anywhere program. Apply & NORD staff will help you start moving to support those with #RareDiseases. bit.ly/3VDPmia
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Jennifer Huron retweetledi
Congress has some important unfinished business to complete before the end of the year for its constituents with #RareDiseases. NORD President and CEO Peter Saltonstall explains what's at stake in this new commentary in @TheWellNews bit.ly/3hrS3p1
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Several celebs recently revealed they're living w #RareDisease. So many conditions, so few treatments. Grateful 4 everyone who raises awareness. As #OrphanDrugAct turns 40 next month, evidence we need this lifesaving law now more than ever. @RareDiseases usatoday.com/story/entertai…
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