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Prikvačeni tweet
My
#RareDisease articles gathered here. Angela Davis | The Mighty Contributor https://themighty.com/author/angela-davis/ …Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
Did you know? Rare diseases currently affect 5% of the worldwide population. Download, edit and adapt the
#RareDiseaseDay infographics from http://rarediseaseday.org/downloads . Share them on social media to spread the word about Rare Disease Day on 29 February!pic.twitter.com/Fyyctckvp7
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Angela Davis proslijedio/la je Tweet
Adults in the U.S. age 18 or older who have been diagnosed with a rare disease or who are undiagnosed are invited to take part in asurvey from
@RareAdvocacy to share their thoughts & experiences with rare disease. The survey is anonymous: https://www.rareadvocacymovement.com/adultslivingrare …pic.twitter.com/XeWmqbcPxk
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Angela Davis proslijedio/la je Tweet
As
#RareDiseaseDay at NIH approaches, NCATS Director Chris Austin, M.D., shares his encounter w/an end-stage ALS patient, over 30 yrs ago—“I have come to realize that#RareDiseases, while intensely personal, are also an urgent#PublicHealth issue.” https://go.usa.gov/xVZtV#RDDNIHpic.twitter.com/ea0T93Xtm9
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Angela Davis proslijedio/la je Tweet
FDA will join the global observance of Rare Disease Day 2020 raising awareness about the 7,000 known rare diseases, many of which have no treatment.
#FDARare2020#rarediseaseday Join us at our public meeting on February 24, 2020 https://go.usa.gov/xdTqf pic.twitter.com/8X3fxPQyYN
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Angela Davis proslijedio/la je Tweet
Dr. Spencer says that patients and caregivers know a lot more about the disease than most of the physicians that they talk to. How do we get that input appropriately into clinical trials?
#DataDIY#RareDisease@BioPontisHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
Hey
@Aetna, suddenly denying life-saving treatment to a child who has been on it successfully for 6 years is not ok. Rare parents have way too much stress as it is to deal with this. Please do the right thing.https://twitter.com/a21751248/status/1223743928098148353 …
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Angela Davis proslijedio/la je Tweet
Every time my boys go through gruelling surgery and unspeakable recovery, my resolve in bringing about a cure for
#jansensdisease is fired. No parent should have to watch their child suffer when there are treatments possible.#WeNeedCuresNowpic.twitter.com/pR2bBasXtZ
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Angela Davis proslijedio/la je Tweet
#DYK more than 7,000#RareDiseases have been identified, but approved drugs are available for only 500? Find out how the NCATS Pharmaceutical Collection can help scientists discover potential new uses for existing drugs: https://go.usa.gov/xdxrM pic.twitter.com/uc8utGQjXu
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Angela Davis proslijedio/la je Tweet
And oh we are without wheelchairs because air travel is not accessible, neither is finding a vehicle to transport you around in a different state!
#RareDiseasePrikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
“Getting people to do research on rare diseases, that is a tough thing. Everybody wants to cure cancer... [or] diabetes. Who wants to cure somebody with a weird disease nobody has ever heard of?” - Rhonda, a
#raredisease patient with#IBM#myositishttp://ow.ly/wfGu50y6jVYHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
Rare disease patients carry the burden of being asked (both explicitly and implicitly) to speak for a whole minority community, to educate people who haven't put in any effort themselves. It is exhausting.
#RareDiseases#patientleadersHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
What it's like relying on one of the most expensive drugs in the world for survival:insurance denials, long convos with doctors and insurance companies, the insurance company not understanding "life-threatening condition" or "life-saving meds."
#RareDisease#USHealthCareHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
This morning I went to the doctor for shortness of breath and lethargy after an infusion. And the most pressing issue was actually getting insurance to again approve my weekly enzyme treatments. I'm so fucking tired of this system.
#RareDisease#USHealthCareHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
“As a rare disease patient, I want to see the whole story out,” Lek says. “I don’t want to say to my patients, ‘This is the end of the road for you.’” Thanks for leading the charge,
@theFourier2khttps://www.yalemedicine.org/stories/rare-diseases?fbclid=IwAR2Ph-oa5_ZhlWwZ5Za5i-GzEjkQoCryOa0sCuCDXDIwCwUWYCxbffsH8_Q …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
It was so incredible to hear about all of the new ways we can continue to advocate and educate for
#raredisease at this year's#BiotechShowcase.#RITS#JPM2020pic.twitter.com/GyRplSfzfz
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Angela Davis proslijedio/la je Tweet
Our founder @jhoronjeff on@CNBC for her bold move to wear a hospital gown on a panel at#JPM20 to highlight the disconnect between the investors in suits and the patients healthcare is meant to serve.#askpatients#jpm2020#JPMHC20https://www.cnbc.com/2020/01/15/jpm-2020-what-health-tech-execs-were-talking-about.html …Prikaži ovu nitHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
Join us now as we honor former NFL player
@SteveGleason with a Congressional Gold Medal for his tireless work advocating for critical legislation to ensure the availability & affordability of life-sustaining communication devices for those living with ALS.https://twitter.com/i/broadcasts/1dRKZLdraMwJB …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
Don’t miss this opportunity to network with patients, patient advocates, health care providers, researchers and others at
#RDDNIH on Friday, February 28, 2020. Together, we can share ideas and address the challenges that#RareDiseases pose. Register today! http://bit.ly/35jGDHY pic.twitter.com/1T8Qv4wyzY
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Angela Davis proslijedio/la je Tweet
Congratulations to Dr. Marni Falk for her $61,134 grant award for
#NUBPL research & a very special thank you to the NUBPL Foundation cycling team, volunteers, and donors for generating this critical grant funding. We’re looking forward to the 2020 Million Dollar Bike Ride!https://twitter.com/MDBRide4Rare/status/1215387577189974017 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Angela Davis proslijedio/la je Tweet
“TMA has always been focused on making a difference for patients." Translational Medicine Accelerator & Cyclica partner to form rare disease medicine accelerator.
#raredisease#CareAboutRarehttp://ow.ly/qJ8K50xRJKBHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi
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