I got an invitation from ….
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RFK Jr.
Seriously there’s supposed to be a big announcement regarding rare disease taking place next Monday in DC. HHS invited some leaders in rare disease to attend in person, and somehow I ended up in the list. To RSVP I had to confirm I’m a US citizen and they will check RealIDs at the door, as the invitations are individual specific and non-transferable. It’s also going to be live-streamed.
I went ahead and booked a flight (I’ll be home Saturday).
Will it be exciting and meaningful? Or did I just waste a grand to hear them tell me to drink raw milk thistle or whatever ?
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@jon-nyc Good luck and make TNCR proud!!!
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Should be a cool experience. Just make sure you clean the toilet seat thoroughly before snorting coke.
I was only joking
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Should be a cool experience. Just make sure you clean the toilet seat thoroughly before snorting coke.
@Doctor-Phibes said in I got an invitation from ….:
Should be a cool experience. Just make sure you clean the toilet seat thoroughly before snorting coke.
Lol.
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Don’t have the bear steak for lunch… Stick with the salad.
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From his lips to gods ears.
Of course there’s such a thing as ‘too good’ - for example, they could say that they’ll give conditional approval for rare disease treatments based on safety alone and let efficacy be proven in a P4 (post marketing) study. That sounds awesome, but the reality is insurance companies wouldn’t approve it considering it ‘experimental’.
What I’d like to see is them allow more flexibility with approvals based on biomarkers rather than clinical outcomes which can take much more time to demonstrate in some diseases.
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@jon-nyc said in I got an invitation from ….:
So my flights are canceled. I guess I’m going to dial in.
When I’m not shoveling.
Snorting Coke of your own toilet just isn’t the same.
