Can a wealthy family change the course of a deadly brain disease?
39 points by Snoozus
by tylermcgraw
4 subcomments
This is the model for rare diseases that wouldn’t be profitable for pharmaceutical companies. Spinal muscular atrophy (sma) is another example that comes to mind.
by georgeburdell
0 subcomment
I know another family like this. One partner still works, but the other one is essentially a full time advocate for an inherited disease that fewer than 100 people in the world are affected by. I don't think much money is involved, but they've changed the narrative about the disease and some researchers are taking them seriously.
by the_wolo
4 subcomments
If so, good for them, good for the humanity, but what we actually must do is to ~~expropriate~~ ~~socialize~~ democratize the means of production.
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