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  1. Prikvačeni tweet

    When a patient hits the ER with pain, they should get pain meds IMMEDIATELY. A hefty first dose of pain meds can result in better outcomes. They do not need your narrative, suspicion or discrimination. They need your help. Be a champion for them.

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  2. proslijedio/la je Tweet
    4. velj

    While I applaud the Chan Zuckerberg Initiative () in funding 30 patient groups, aiming to build a model for tackling , why was Disease not included? It’s one of the most prevalent but also least funded rare? Help us

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  3. Advocate for yourself and your child - always. Be respectful - always.

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  4. proslijedio/la je Tweet
    1. velj

    Based on a recent tweet about iron dosing, I’ve had a few requests for a . Iron deficiency is relatively frequent and seen by all types of physicians. For years, iron supplements were given multiple times a day. So why the change? 1/n

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  5. You know what's different about Cheat Codes: A Sickle Cell Podcast by ? This is show prep. To make sure what we tell you about disease is I just spent several hours with my vetting facts and evaluating data. How’s that for depth?

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  6. . yes is on point 🎯! The complexity of cannot be captured and has not been studied. This biopsychosocial disease cannot be captured in a 100 page report. More roadblocks to accessing medications. We have to be loud about this!

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  7. proslijedio/la je Tweet
    29. sij

    ICER report is clearly flawed bc we cannot put a money value on decrease in pain crisis. It is priceless. Also QALY are not an appropriate measure of value.

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  10. Can I just say this? The flu is winning the body count race. You can be worried about but if you don't care about the ... You're trippin'.

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  11. 😍😍😍 I could listen to these five people talk about disease all day. ( Nirmish Shah, Biree Andemaruand Matt Heeney) Burden of Sickle Cell Disease via

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  12. There are folks out there who are making BIG DECISIONS ABOUT YOUR care without knowing what you go through. I urge you to fill out this survey to educate folks on your battle.

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  14. In a country without updated and comprehensive guidelines on pregnancy in SCD, perhaps this snapshot will serve as a reminder that change is needed right here at home.

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  15. If there is one crucial theme to consider, it is that revolution does not entail extravagant and convoluted methodologies but rather clear and consistent change...

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  16. it is imperative that we acknowledge the disparity in outcomes in pregnant women with SCD and work as a community to drive forward with higher quality and rigor in our care of these patients...

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  17. While the therapeutic landscape of is rapidly moving towards a zenith, there remain many gaps in our ability to provide comprehensive care to individuals with SCD. In 2019, the data that have been presented to us by colleagues worldwide are consistent and sobering...

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  18. proslijedio/la je Tweet
    23. sij

    Got a call from ER doc at 3am for a 6mo with dactylitis and pneumonia. Said it was “one of those families” that are ****ing unreasonable & refusing everything after 1 dose of iv antibiotics, cbc clotting, & iv going bad. Clearly thought I was going to agree...

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  19. in disease is very complex. Here's a "Best of 2019: Pregnancy in Sickle Cell Disease" and I wrote for Please take a peak at this effort to shine light on what happened last year in this space.

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  20. proslijedio/la je Tweet
    22. sij

    A recent article by highlights the need for standardization of endpoints used to assess new therapies for .

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  21. proslijedio/la je Tweet
    22. sij
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