Angela Davis

@DavisAngesdavis

Writer Rare Disease on The Mighty and Patient Worthy, () Warrior , ,

Bar Harbor
Vrijeme pridruživanja: kolovoz 2014.

Tweetovi

Blokirali ste korisnika/cu @DavisAngesdavis

Jeste li sigurni da želite vidjeti te tweetove? Time nećete deblokirati korisnika/cu @DavisAngesdavis

  1. Prikvačeni tweet
    13. pro 2016.

    My articles gathered here. Angela Davis | The Mighty Contributor

    Prikaži ovu nit
    Poništi
  2. proslijedio/la je Tweet

    Did you know? Rare diseases currently affect 5% of the worldwide population. Download, edit and adapt the infographics from . Share them on social media to spread the word about Rare Disease Day on 29 February!

    Poništi
  3. proslijedio/la je Tweet
    23. sij

    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 to share their thoughts & experiences with rare disease. The survey is anonymous:

    Poništi
  4. proslijedio/la je Tweet
    27. sij

    As 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 , while intensely personal, are also an urgent issue.”

    Poništi
  5. 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. Join us at our public meeting on February 24, 2020

    Poništi
  6. proslijedio/la je Tweet
    4. velj

    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?

    Poništi
  7. proslijedio/la je Tweet
    3. velj

    Hey , 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.

    Poništi
  8. proslijedio/la je Tweet
    29. sij

    Every time my boys go through gruelling surgery and unspeakable recovery, my resolve in bringing about a cure for is fired. No parent should have to watch their child suffer when there are treatments possible.

    Poništi
  9. proslijedio/la je Tweet
    28. sij

    more than 7,000 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:

    Poništi
  10. proslijedio/la je Tweet
    28. sij

    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!

    Prikaži ovu nit
    Poništi
  11. proslijedio/la je Tweet
    27. sij

    “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 patient with

    Poništi
  12. proslijedio/la je Tweet
    23. sij

    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.

    Poništi
  13. proslijedio/la je Tweet
    23. sij

    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."

    Poništi
  14. proslijedio/la je Tweet
    23. sij

    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.

    Poništi
  15. proslijedio/la je Tweet
    19. sij

    “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,

    Poništi
  16. proslijedio/la je Tweet
    17. sij

    It was so incredible to hear about all of the new ways we can continue to advocate and educate for at this year's .

    Poništi
  17. proslijedio/la je Tweet
    15. sij

    👀 Our founder on for her bold move to wear a hospital gown on a panel at to highlight the disconnect between the investors in suits and the patients healthcare is meant to serve.

    Prikaži ovu nit
    Poništi
  18. proslijedio/la je Tweet

    Join us now as we honor former NFL player 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.

    Poništi
  19. proslijedio/la je Tweet
    14. sij

    Don’t miss this opportunity to network with patients, patient advocates, health care providers, researchers and others at on Friday, February 28, 2020. Together, we can share ideas and address the challenges that pose. Register today!

    , , i još njih 7
    Poništi
  20. proslijedio/la je Tweet
    12. sij

    Congratulations to Dr. Marni Falk for her $61,134 grant award for 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!

    Poništi
  21. proslijedio/la je Tweet
    10. sij

    “TMA has always been focused on making a difference for patients." Translational Medicine Accelerator & Cyclica partner to form rare disease medicine accelerator.

    Poništi

Čini se da učitavanje traje već neko vrijeme.

Twitter je možda preopterećen ili ima kratkotrajnih poteškoća u radu. Pokušajte ponovno ili potražite dodatne informacije u odjeljku Status Twittera.

    Možda bi vam se svidjelo i ovo:

    ·