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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 https://www.kif1a.org/wetacklerare/ via@KIF1A &@UpliftingAth -
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 -
At least it’s a good game so far even though I couldn’t care less about either team!
#SuperBowlLIV#wetacklerare#careaboutrare -
Tomorrow is the start of our final
#DataDIY seminar. Join us to hear from experts at@awscloud@bensbutler@VicCondron You can access our previous sessions and download our workbooks on our website.#CareABoutRare https://globalgenes.org/data-diy/ -
I love... YOU, hope, music, cheer, dance and freedom. But most of all I love humanity.
#cheerleaderofhope#kindness#makeadifference#CareAboutRare#iamrare#WeTackleRarepic.twitter.com/iAJPmFxL8n
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Quench Bio hopes to develop new therapies for serious and rare inflammatory diseases by targeting a family of protiens known as gasdermin.
#raredisease#CareAboutRare http://ow.ly/YEk650yaDbz -
#WhatExactlyIsRare
There are 7,000 different kinds of #RareDisease Just over 80% of rare diseases have less than 6,000 patients Do you#CareAboutRare -
“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 http://ow.ly/tyoT50y9GlL -
Encouraging results seen with drug therapies combating type 1 spinal muscular atrophy.
#raredisease#CareAboutRare http://ow.ly/pHDy50y9GkV -
#WhatExactlyIsRare
... 1 in 10 people have a #RareDisease...affecting 30 Million Americans. That number doesnt include Spouses, children, extended family, or caregivers Do you#CareAboutRare pic.twitter.com/KDC4HnWU1S
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"Alexander's Film" premiered at the recent
@NiemannPickUK Annual Family Conference. The piece feat. Alexander Key and his parents who discuss their lives before & after Alex was diagnosed with NPC.#RareAware#CareAboutRare#shiningalightonNPC#RareDiseasehttp://ow.ly/INvU50xXkRI -
#WRDD2020 is quickly approaching, what are your plans on the rarest day of the year? Find an event near you on our events hub, or share your own.#CareAboutRare https://globalgenes.org/events-hub/ -
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@EmilysEntourage envisions a future where nobody with#cysticfibrosis is left behind. We are all committed to advancing#CF breakthroughs. View#EmilysEntourage's 2020 video: http://ow.ly/opBH30qdBzY#raredisease#orphandisease#careaboutrare -
You’re welcome

#ChronicIllnessProblems#NeverFails#BehcetsDisease#Vasculitis#IntracranialHypertension#Arthritis#ChiariMalformation#RareDisease#AutoimmuneDisease#CareAboutRare
pic.twitter.com/IWnEd5gykOOvo je potencijalno osjetljiv multimedijski sadržaj. Saznajte više
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Watching
@theABTA Webinar on Holistic Management of Brain Tumor Symptoms. Tune-in now or view the recording later.#BTSM#careaboutrare https://www.abta.org/about-brain-tumors/brain-tumor-education/webinars/ …Prikaži ovu nit -
"Her itch began in the evening and lasted all night. She would scratch herself until she bled." Listen to Claire's powerful account of her daughter Eleanor's journey w/
#PFIC in our new#Youtube video:#PFICvoices#careaboutrare#stoptheitch#pficawarenesshttps://www.youtube.com/watch?v=6Dta12ivo5s … -
I've got my rolling pin, a ton of flour, sugar, butter, & love! I am ready to bake!
The fine print: I can only mail
s to friends, family, friends of family, & people I've met IRL.
#cookies4cures#KidscanmakeaDifference#kidbaker#kidpreneur#raredisease#careaboutrarePrikaži ovu nit
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