An article in the New York Times this week highlighted the benefits (and some caveats) of online social networks for medical communities. People with a wide range of health issues are participating in "big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks" that are run by private companies and offer platforms for sharing everything from hard data to soft stories. Others turn to "small sites started by patients on networks like Ning and Wetpaint".
The Norrie Disease Yahoo Group is a simple version of a small, patient-driven social community that communicates primarily by messages on a gated listserv. It is the only online community we know of that is dedicated to individuals and families affected by Norrie Disease.
If you have had success with another online networking service, we'd love to hear about it! Please share your experiences in the comments section.
Hi allison marchalonis maxwell!
1 year ago