Nell Meosky Luo

#WorldOrphanUSA looking forward to hanging out with some like-minded individuals focused on #RareDisease and patient-driven care tonight. Come chill with us at @LenoxHotel Solas bar, 5-7pm! @foliahealth

Thanks to our friends at @foliahealth and @TbdAngels as some of the first startups and investment groups to take advantage of these features!

Enjoyed this dynamic conversation - will say that the title of this turned out kinda weird! Check it out if you're interested in some very plainspoken discussion on what we need to do for individuals to receive personalized care.

@ekeeleymoore Wow he looks so great!!

I ❤️ someone rare #RareDiseaseDay #cysticfibrosis

@ekeeleymoore Oh you are going to regret asking for photos...incoming!

@NellMLuo This is your first parent tweet I’ve seen 🥰 Send pictures!! And yes, it does all hit differently 😕

I'm finding that being a parent has opened up a new type of empathy - crises like the Ukraine invasion hit differently now. #Ukraine #PeaceNotWar

@breckgamel Thanks Breck!! Meredith is 4 months old, I will text you photos!!

@NellMLuo Wait, you’re a parent?! Aw!!! Congratulations!!!!

@MsCourtneyBurns Ridiculous. I run a successful digital health startup and have a 4-month-old. Honestly, it's very doable. You got this.

Today I had a preceptor say: “It is my opinion that females in medicine cannot become department chairs or deans and also have a family. Doing both well is not possible.” I’m proud to be a woman in medical school, but sometimes it can feel so discouraging 😔

Pharmaceutical company: Here’s an ad for our life-saving medication Me: Wow can I buy it? PC: No, only a doctor can prescribe it Me: Can I suggest it to my doctor? PC: No, they will be very mad that you did any research into your condition whatsoever, but plz enjoy our ad :)

Happy victory Monday, folks #BillsMafia

Broken English is a sign of courage and intelligence and it would be nice if more people remembered that when interacting with immigrants and refugees.

@G17Esiason Lol

How about 19 white tho 🔥🔥 10/10 effort.

@ekeeleymoore Yes yes yes

Meeting this question with one of my own: How can telehealth services improve PROVIDER engagement? Actually I propose a reframe altogether: How can telehealth services improve our ability to coproduce good care and equitable outcomes? That’s what we really want!

So excited for this new capability! I've already personally been able to view data from my latest clinic visit that wasn't easily visible from my patient portal, and I could see it next to my own tracked data. Check it out! #powertothepatient #interoperable

@PierreKory Observational research is the way of the future - especially as we think about issues like treatment burden alleviation. Check out this awesome study from the team at @foliahealth: hero2study.com

I wrote this up in the hopes I could get the "RCT Fundamentalists" to understand that the data on efficacy is coming from everywhere not just the RCT's.. enjoy

@stevesilberman @abbys480 Next step for CF: figuring out how to safely decrease the burden of treatment for those who are doing great on #Trikafta. (Awesome study looking at this: hero2study.com) #cysticfibrosis

Don't miss this very powerful piece on raising a daughter with chronic ilness by @Abbys480. Searing writing. (My next book is also on #cysticfibrosis, and I can't wait to read Abby's.) #CF #CFAware washingtonpost.com/health/cystic-…

Deeply tragic. Upshot here is we shouldn’t be randomizing patients to placebo when the outcome is certain death. We should use natural history models and synthetic control arms in these settings instead of obligating a placebo arm to a known, fatal outcome statnews.com/2021/08/19/bio…

@ScottGottliebMD @G17Esiason YES

@drjohnwhyte Yes! But it’s not a short and simple path, took 3 years to launch. Check us out @foliahealth

Over 200 health apps are launched every day. Impressive. But where’s the innovation? And are we talking to patients to find out what they really need ? #health #digitalhealth