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

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.