February 11, 2009

Rare Diseases and Online Resources

One in ten Americans is living with a rare disorder. The internet can be a vital source of information for people who may never have otherwise met someone else with their disease or condition. This is the crux of a discussion happening on e-patients.net and on washingtonpost.com.

One of the challenges is making sure everyone who needs to find these resources is able to. The Pew Internet Project’s Generations Online report shows how social media use tapers off among older adults and brings to mind an image of the internet as a pool of varying depths.

Email and search are the shallow waters of the internet pool. Everyone starts there, some people don’t go further. Social networking sites are in the deep end. I think some people dive in because they’re naturals, others venture because they are compelled by circumstance such as a rare disease.