1. The latest crowdfunder to support David Tuller's work has opened. To donate click here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 4th October 2021 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

    New Zealand
    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.


Share This Page