Carethics

Hello people, we’re back. This year our focus will be on covering the coming together of technology, internet and amplifying effect it can have on the healthcare scenario!

As the first article of the year, we’d like to point your attention to a different kind of social network Rareshare. India does not yet have enough forums and support groups for chronic diseases and things only get tougher if it’s a rare ailment. I think Aamir Khan’s Taare Zameen Par was instrumental in drawing attention to autism but did it actually lead to parents and teachers connecting? In India, I imagine this to be an excellent feature for a full-service healthcare site or maybe a hospital’s website but perhaps not a stand alone service. What about privacy issues? Do you think people would submit experiences / private information in India? Nevertheless, this deserves to be the first service to be covered by us in 2009.

Rareshare: A Community For People With Rare Medical Problems

Rareshare, a community site for people with rare medical conditions, has shared some of it most recent growth data with us and the results are impressive. Since launching over the summer, the site has grown each month by between 35%-50%, and now has over 700 communities associated with different disorders. Given the nature of the site, the numbers are bittersweet, but it’s nice to know that so many people are finding others they can connect with. Visitors to the site are invited to contribute information and their personal experiences regarding each condition, and are also able to make contact with other users that are facing the same issues. Most communities offer a description of the condition, along with links to relevant websites that contain more specific information, and there’s a forum where the users can collectively give each other advice.

Rareshare says that it has been collaborating with the National Institutes of Health and the Canadian Organization for Rare Disorders, which are helping it gain traction in an incredibly crowded space (most other medical sites are focused on more common afflictions). It’s usually good to see healthy competition, but this is one case where consolidation would benefit the users – hopefully Rareshare (or something like it) can establish itself as the de facto web portal for rare diseases. That said, we should also note that communities focused on some rare diseases have already formed either at standalone sites or on larger health networks, so any readers looking to find a community focused on a particular disease would do well to do some searching beyond Rareshare.