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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: https://go.usa.gov/xdKXd#careaboutrare -
We've enjoyed connecting and educating this week during
#DataDIY. Thanks to all in-person and livestream attendees!#CareAboutRare#raredisease https://dev-global-genes.pantheonsite.io/data-diy/ -
“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_rarehttps://lamberteatonnews.com/2020/02/05/ultra-rare-disease-lems-bonds-friendship … -
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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.”https://www.thedoctorstv.com/articles/how-woman-uses-positivity-to-overpower-her-pain … -
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#dmdhttps://twitter.com/rarediseaseday/status/1222536213942427651 …
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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: http://bit.ly/36603AE#careaboutrare -
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. https://datadiyworkshop4.mediasiteservices.com/?handler=Register …#DataDIY#raredisease#CareAboutRARE#Pharma#BioPharma#Pharmaceuticals -
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#RareDiseaseDayhttps://twitter.com/statnews/status/1224558263108325376 … -
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#PurpleBlueGreenhttps://twitter.com/Laurel_Mimmo/status/1224085982766518272 … -
Never ok.
@FresnoPolice@FresnoBee@CityofFresno what are you doing about this?#epilepsy#CareAboutRare https://twitter.com/cureepilepsy/status/1224353994522480640 … -
We're ready to introduce you to another MGA Triple Crown Showdown Race Ambassador! Meet Verné Coby!
#mgakc#mgacomo#mgastl#mgaspg#mgawch#mganwa#mgankc#mgatop#careaboutrare#rarekc#mgstrong#ihaveheardofmg… https://www.instagram.com/p/B8HbLB_Jrlc/?igshid=lbxvyk4278wn … -
Kicking off day one of our
#DataDIY sessions! We're excited to connect and learn together this week.#CareAboutRare https://globalgenes.org/data-diy/ -
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: http://bit.ly/36PyCuV#careaboutrare#awareness -
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#livejusticepic.twitter.com/FfYZBMG5D9
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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 -
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/ -
“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
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