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Fighting a One-of-a-Kind Disease (2014) Mnookin New Yorker

Discussion in 'Health News and Research unrelated to ME/CFS' started by Hutan, Apr 19, 2018.

  1. Hutan

    Hutan Moderator Staff Member

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    I found this article in the New Yorker when I was reading a more recent one.

    One of a Kind - What to do if your child has a condition that is new to science?
    Seth Mnookin

    The takeaways for getting progress on a rare disease seem to be:
    • it helps to have plenty of money, to access researchers and fund their further work
    • social media can have a big impact on progress

    It was interesting to read the following, bearing in mind that this was in 2014, when only around 9 children with this particular genetic condition had been identified across the world.

     

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