Rareshare is a social network for people coping with rare diseases like adrenomyeloneuropathy or erythromelalgia. Rareshare was created by David Isserman, in cooperation with Nutra Pharma. Rareshare currently features communities for about 600 diseases and expects to expand this to about 1,000 by fall. Since the site launched about a month ago, a number of very active communities have already formed around quite a few of these disorders.
The idea behind the site is to bring together people with rare disorders, who often don't have much of a support network within their local community. Rareshare is also hoping that, over time, more doctors who specialize in some of these diseases will join the community. However, as doctors face some liability risks when giving out advice on the net, it remains to be seen if a lot of physicians will sign up to Rareshare.
In April, we listed quite a number of online support groups for people coping with a wide range of illnesses, though Rareshare is the only one that we are aware of that purely focuses on rare diseases.
The main place for the interaction between users is in the discussion forums that are the central focus of every community. Rareshare smartly kept these forums very basic and focused on usability over features.
Besides joining communities and getting involved in the discussion forums, there does not seem to be a way for users to send messages directly to each other on the site yet.
User profiles are very much what one would expect from a social network, with the added bonus of being able to import an RSS feed for a users' blog. This would be especially interesting for somebody who is already blogging about a certain disease. One area where Rareshare might be able to add features would be to give users the option to start their own blog on the site.
While Rareshare's basic idea is to form support groups around these diseases, it also collects some of the more basic information about the diseases such as symptoms, proven and experimental treatments, long term prognoses, etc.
For most diseases, a lot of this information is still missing and even when it exists, it is often rather basic. Users who are subscribed to a group can start adding this information using a very simple text editor. Thanks to its simplicity, adding information and making changes to the site should be very easy, even for those who are not very tech-savvy. At the same time, though, these are not wikis, so there is no way to easily revert back to earlier edits or see who made specific changes.
It would be nice if Rareshare pre-populated some of the information with links to information on other sites like the Rare Diseases Clinical Research Network or even just Wikipedia.
Rareshare is, of course, one of those sites where one wishes it didn't have to exist. However, it definitely looks like it could become a great resource for those who have to cope with a rare disease and don't have a local support network, or those who are looking to expand their local network into a world-wide support network. While there are already a number of online support groups in existence for specific diseases, Rareshare looks like it's the only one that is trying to build a more comprehensive network of communities under one roof.