There's no doubt that my technical blog helped do this the first time. But, I firmly believed that this could be repeated without an established presence. And

There's no doubt that my technical blog helped do this the first time. But, I firmly believed that this could be repeated without an established presence. And, it has been repeated. After I co-authored an article with a fellow parent describing how social media + sequencing could discover diseases, a family with an undiagnosed child reached out to me. They had been exome sequenced, but they were left with two de novo mutations of unknown clinical significance. It wasn't clear if either was the cause of their child's symptoms. I gave them advice on how to structure a site with the highest likelihood of finding another patient. They created this on their own: http://milosjourney.com/ http://milosjourney.com/ Within 29 days, they found a second patient with a de novo mutation in the same gene (KDM1A). Just looking at the kids made it obvious they had the same disorder. And, so KDM1A has become the second disease discovered by social media + sequencing. The heartening aspect is that this family didn't have a prior social media presence at all. I recommended that they buy Google AdWords on the names of the candidate genes of unknown clinical significance they were given, but even that wasn't necessary. So, I'd recommend that anyone going through a diagnostic odyssey and start blogging everything -- medical terms, lay terms, doctors names, symptoms, medications, treatment attempts, etc. These are all the kinds of things that fellow sufferers are likely to type into Google.