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?