RareShare.org - Connecting Patients of Rare Diseases

There are plenty of sites out there devoted to those patients who suffer heart disease, cancer, and diabetes, but if you’re afflicted by a less common disorder, you may not be able to enjoy the same amount of web resources. However, a new site, RareShare, aims to connect patients, friends, and families affected by rare diseases. The idea behind the site is that in total, there is a relatively large amount of people across the United States and Europe (the site estimates over 30 million) that are suffering from rare diseases, and that these people don’t have the same opportunities to access online communities targeted for cancer patients, victims of heart attacks, etc. Essentially, RareShare is a standard web 2.0 site; you can sign up for free, create a personal profile (which naturally focuses on your disease), and join a community where you’ll meet others who are dealing with your same illness. Each community is moderated by a “community expert” (though its not clear how said expert is chosen), and features a list of symptoms, a description of the disease, a list of members, and an open forum.

“RareShare is unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders”

RareShare provides an easy means of communication and dissemination of knowledge in regards to diseases that don’t receive a lot of media attention. It’s free to join, though you can actually browse through the communities and read most of the information without signing up.

Is the site moderated by healthcare professionals? How legitimate is the medical information that the site offers? Is it all user-generated content?