Crowdfunding rare disease research – one family at a time


3 Responses to “Crowdfunding rare disease research – one family at a time”

  1. show me says:

    The more of these extremely rare diseases that are studied, the better the techniques to identify genetic disorders gets and the better our understanding of the genome gets. So even though a person might not believe it is worth loads of money to save one life, more are indirectly influenced in the long run. And with this method of funding a requirement should be that the results are “open sourced” and not patented.

    • CH says:

      Yes! We learn a lot about how things work when we look at why and what caused something to fail to work. By looking at these rare disorders we learn what gene failed to work and what kind of things it caused, and by this we can potentially learn a lot of new things about what that gene does when it does work.

  2. paul says:

    Am I the only one just a little eeked by the idea of crowdfunding for this kind of thing? I can’t help thinking “Sorry, Tommy, you’re not cute enough, and your parents have lousy writing skills, so you’re going to die.” I know it’s not zero-sum, and that the alternative these days is nothing at all, but still.

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