Rare diseases, by definition, only affect a small number of people.

There are lots of different rare diseases.

Overall, lots of people suffer from rare diseases.

However, the big problem is that – due to small numbers – each individual condition will have very little research carried out.

In the last week or so I’ve come across two resources that cover the area using two different approaches:

  • ‘Old style’ web 1.0 Orphanet that covers a lot of conditions and is encyclopedic in nature.
  • ‘New style’ web 2.0 RareShare that provides a framework for users, but the users are expected to give their perspective and share their experiences.

Both have merit – but surely more powerful combined?

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