Really great article on Ben's Friends in mHIMSS, a big healthcare trade journal. I think this quote encapsulates Ben's Friends perfectly: ""It creates a positive experience out of a negative one," he says." - that he is me. :)
Ben's Friends – a mobile resource for those with rare diseases | mHIMSS:
"Enter Ben's Friends.
In this age of mHealth tools and real-time resources at your fingertips, this online platform of patient support communities is quickly finding its niche in connecting people with rare diseases to others who share that disease – and, in some cases, to the far-flung clinicians who are the experts in that field. Since being launched in 2008, the platform has grown to include 34 communities, and counting. In a sense, it's the ultimate definition of "patient-centric healthcare."