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Matt's struggle to find the cause and cure of his son's disease reminded me of a post I read sometime ago:

http://lesswrong.com/lw/gvi/metamed_evidencebased_healthcare...

While probably not applicable in this case, I think many people struck with rare/weird diseases could find this service useful. MetaMed is basically a group of people who are really good at maths, know the newest medical technologies and procedures, and are willing to dig through and evaluate tons of medical papers and publications.

I hope that this will help someone. I'm also interested if anyone on HN used this service and could tell how it worked out in their case.



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