Top Tweets for #RareIsEverywhere
I’m from Pennsylvania, USA. Where are all my fellow #RareDisease warriors located?
#RareisnotRare #RareisEverywhere
#FabryDisease #EhlersDanlosSyndrome
Feb is #RareDisease Month! While #NEC is not rare in the #NICU, it's a rare disease bc it affects fewer than 200k in the US. #RareisEverywhere & @NECsociety is proud to be #RareAsOne. You can help #preventNEC & build a 🌎 without this devastating disease @ https://t.co/YeDND3O6PW
#rareiseverywhere Spread the word and join us virtually to engage in the discussion of rare disease https://t.co/PF32sk1GPR
Join us as we celebrate #RareDiseaseDay and #RareDiseaseWeek with EE’s #rareiseverywhere digital campaign! #showyourstripes #cysticfibrosis #careaboutrare #beatcf https://t.co/OQEG51YtuI
A rare health condition impacts all areas of life, for the person and their wider family. Changes to the system to benefit those living with a rare disorder benefit everyone!
#FairforRareNZ #RareisEverywhere
It really is hard to believe this was already two years ago @runproctor
Dreaming of all the adventures that await us in 2021. #rarematters #rareiseverywhere #1in12
Watch SMA advocate Fiona talk about why we need New Zealand to be Fair for Rare with the development of a National Rare Disorder Framework.
#FairforRareNZ #RareisEverywhere
https://t.co/LCRqEkUAyP
Okay...so...this happened.
You know you’re working on a pretty cool project when you finish an interview with....wait for it.......🥁 🥁 🥁 The Washington Post!
Have I mentioned lately that I 💚what I do!!
Listen to our CE Lisa Foster's comprehensive interview with Jesse Mulligan on RNZ about the need for rare disorder policy.
#FairforRareNZ #RareisEverywhere
https://t.co/HHf0jJGarM
Thanks to @HAE_Canada @raredisorders @rarediseaseday @RareDiseases for your advocacy @CSLBehring @TakedaPharma @HAEGARDA1 for helping me manage my #hereditaryangioedema #RareisEverywhere #RareisStrong #ShowyourGenes #wearyourjeans
#RareDiseaseDay is February 29, 2020. Watch @drcgreenberg discuss her research in rare diseases and the importance of research in this area with @iLikeHue: https://t.co/4V21f6XNlI
Tomorrow EVERYONE will be talking about rare disorders - watch The AM Show at 7.40 to see CE Lisa & patient advocate Nicola.
At 1.15pm tune in to Lisa speaking with Jesse Mulligan on RNZ about the need for a National Rare Disorder Framework.
#FairforRareNZ #RareisEverywhere
Polar Plunge this morning!!
#showyourrare #outrunrare #rareiseverywhere #1in12 #polarplunge #specialolympics @ Arbour Lake, Calgary https://t.co/XwFzikk0Lz
I look back on 2018 with tremendous pride for all that was accomplished to brim awareness to the #raredisease community.
Much more to come as we prepare to kick off Outrun Rare 2020 in NFLD on May 18th! #rareiseverywhere #1in12 #showyourrare
We wish to congratulate all the winners of the @ChanZuckerberg funding #RareAsOne program. We believe this will accelerate treatments for #RareDiseases. We do look forward to the expansion of this program to cover other disease areas. #RareisEverywhere #StrongerTogether
Big news: We’re funding 30 patient-led organization to support their launch of #RareDisease research networks in their search for treatment options #RareAsOne https://t.co/MI74PGnwFf
Rare Disorders NZ congratulates Kalydeco campaigners after PHARMAC announced their decision to fund a medicine for people living with cystic fibrosis.
#RareisEverywhere #FairforRareNZ
https://t.co/ezPDSy9qPX
@Rossco006 @OutrunRare Nice shout out @Rossco006!
2020 is going to be a seriously EPIC year for @runproctor & the @OutrunRare team bringing awareness to access, support and research funding in collaboration with @rarediseasefdn for the 1 in 12 🇨🇦 living with #raredisease
#rareiseverywhere
@rarediseasefdn @OutrunRare @ultrasignup @runproctor @AltraRunning @PlanetFoods @braydenhiltz @BossDigitalYEG @run_political @CTVMarkVillani @jordanwitzel #rareiseverywhere 🧡
All ready for the half marathon tomorrow in Edmonton. Will be wearing my @OutrunRare colours as usual. #outrunrare2018 #1in12 #rareiseverywhere #rarematters #outrunners #ambassador
You are not alone. There is support available for those affected by #raredisease
Learn more about @rarediseasefdn’s Peer2Peer support groups👇🏻
#1in12 #rarematters #rareiseverywhere
We are here to support the ones overturning stones everyday <3 https://t.co/BAJRNhsexX join us!
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