Discovering new diseases with the internet: How to find a matching patient

In this blog post, Matt Might describes ways you can use the internet to find more patients with the same rare genetic disorder, including

  • Setting up your own patient-finding web site
  • Creating content for the web site
  • Editing Wikipedia
  • Setting Google alerts
  • Buying Google AdWords
  • Using gene names for domain names
  • Minor search engine optimization
  • Using Google analytics and webmaster tools to find “cloaked” patients
  • Standard registries

Participant-Driven Matchmaking in the Genomic Era

October 2015
Human Mutation

This open-access scientific journal publication explains why matchmaking efforts led by affected individuals and their families—participant-led efforts—can have more impact than those led by researchers or clinicians.