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by bckr 1583 days ago
I think it's okay to express this, but would be more valuable if you added more to the conversation e.g. what you positively desire.
1 comments

Rare diseases need some public funding. Not only for ethical reasons, but we may also find out very nontrivial things about our own biology this way.
We probably shouldn't put the main focus on rare disease but on genetic manipulation in general. It would be much more valuable to be able to cure arbitrary genetic defects than just the ones that are somewhere between uncommon and extant.
Not only for ethical reasons, but we may also find out very nontrivial things about our own biology this way.

If it's looked at through the right lens, yes. I'm not sure if genetic research is actually the optimal means to find such takeaways though.

I mean, this has definitely happened in the past; study of various rare genetic diseases has elucidated and illuminated the processes by which diseases occur at a molecular level, and often have utility far outside the original rare disease.

As to whether that means it's an effective payoff if you put more money in rare diseases (and therefore less into non-rare diseases), I can't say, so instead, I have a portfolio with a small but not tiny amount for the collection of all rare diseases.

They have some public funding.