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NIHBrainTumor
@NIHBrainTumor
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9 h |
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We agree. We have a Health and Wellness Counselor as part of our #NCICONNECT team to help patients and caregivers cope at all stages of their cancer journey. Learn more: go.usa.gov/xdKXd #careaboutrare
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IDFA
@IDFAustralia
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9 h |
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Global Genes
@GlobalGenes
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11 h |
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We've enjoyed connecting and educating this week during #DataDIY. Thanks to all in-person and livestream attendees! #CareAboutRare #raredisease dev-global-genes.pantheonsite.io/data-diy/
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Dawn DeBois
@MyBattleWithin
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12 h |
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“I don’t think there is a rare disease patient on the planet who doesn’t harbor some hurt deep in their soul about how friendships change after a diagnosis.” #RareDiseaseDay #friendship #careaboutrare @on_rare lamberteatonnews.com/2020/02/05/ult…
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Stephanie Fischer
@RarePOV
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15 h |
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Thanks to @TheDoctors who #CareAboutRare! Today they featured Amberly who developed #CRPS after her leg was severely injured in an accident: “34 surgeries was a lot but it was really the easiest part. The hard part is getting through the pain every day.” thedoctorstv.com/articles/how-w…
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Santhera
@Santhera
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19 h |
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With @RareDiseaseDay 2020 coming up, we @Santhera take the opportunity to express our thanks and gratitude to patients, their families, caregivers and the entire #Duchenne community for their continued support. #raredisease #wrdd2020 #careaboutrare #dmd twitter.com/rarediseaseday…
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Repeat Diagnostics
@RepeatDx
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4. velj |
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Diagnosing #rare diseases can be extremely challenging for patients and their care teams. Here we look at 3 major benefits of an accurate and timely #diagnosis: bit.ly/36603AE #careaboutrare
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TREND Community
@trendcommunity
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4. velj |
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Our Founder/CEO, Maria Picone will be teaming up with our Citizen Scientist Award Winner, Lara Pullen to speak at #DataDIY today!
Register for the live stream at the link below.
datadiyworkshop4.mediasiteservices.com/?handler=Regis…
#DataDIY #raredisease #CareAboutRARE #Pharma #BioPharma #Pharmaceuticals
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KT Pickard
@kt_pickard
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4. velj |
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Brilliant! “All of the [funded] groups will be required to convene an international scientific conference to bring together patients, researchers, and clinicians...” #RareAsOne #RareDisease #CareAboutRare #RareDiseaseDay twitter.com/statnews/statu…
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SynGap Research Fund - 501(c)(3)
@SyngapRF
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3. velj |
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How do and should #syngap1 patients get medical care? How does their intellectual disability get in the way of getting the best possible care? What can we do as a community to improve this? #careaboutrare #epilepsy #autism #ID #PurpleBlueGreen twitter.com/Laurel_Mimmo/s…
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SynGap Research Fund - 501(c)(3)
@SyngapRF
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3. velj |
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Never ok. @FresnoPolice @FresnoBee @CityofFresno what are you doing about this? #epilepsy #CareAboutRare twitter.com/cureepilepsy/s…
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Global Genes
@GlobalGenes
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3. velj |
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Kicking off day one of our #DataDIY sessions! We're excited to connect and learn together this week. #CareAboutRare globalgenes.org/data-diy/
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Repeat Diagnostics
@RepeatDx
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3. velj |
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February is here and that means it's not long until #RareDiseaseDay on the 29th! Have a read of our latest blog to find out why and how we're getting involved: bit.ly/36PyCuV #careaboutrare #awareness
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Cookies4Cures
@Cookies4Cures
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3. velj |
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Valentine's Day baking is under way!!! LMK if you want cookies! We are still taking requests. Helping kids with rare diseases has never been so sweet 😉
❤🍪❤🍪
#Cookies4Cures #raredisease #SMA #PANS #rareasone #careaboutrare #kidbaker #kidpreneur #madewithlove #livejustice pic.twitter.com/FfYZBMG5D9
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Marni Cartelli
@Purrfectly_Rare
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3. velj |
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Anyone else want a cane like the one @JLo used in her #SuperBowl show?
Can you guys imagine walking into our #raredisease conferences, or better yet, meetings with members of Congress with that?
It just screams #empowerment
Bet they would pay attention then
#CareAboutRare
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Stephanie Fischer
@RarePOV
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2. velj |
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“What if we lifted up scientists and doctors the same way we lift up professional athletes? What if we supported the world’s best & brightest researchers working on the next breakthrough treatment?” #WeTackleRare #CareAboutRare kif1a.org/wetacklerare/ via @KIF1A & @UpliftingAth
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Barby Ingle
@BarbyIngle
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1. velj |
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I love... YOU, hope, music, cheer, dance and freedom. But most of all I love humanity. #cheerleaderofhope #kindness #makeadifference #CareAboutRare #iamrare #WeTackleRare pic.twitter.com/iAJPmFxL8n
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Tom Weiser
@WeiserTom
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1. velj |
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#WhatExactlyIsRare🦓 There are 7,000 different kinds of #RareDisease
Just over 80% of rare diseases have less than 6,000 patients
Do you #CareAboutRare
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Global Genes
@GlobalGenes
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31. sij |
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“Until today, there were no treatment options specifically for patients with epithelioid sarcoma... The approval of Tazverik provides a treatment option that specifically targets this disease.” @US_FDA #raredisease #CareAboutRare ow.ly/tyoT50y9GlL
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IDFA
@IDFAustralia
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31. sij |
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