I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.
It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called AVMSurvivors.org. We realized we were helping a lot of people so we started many more. Today we run 30 online support groups and are growing rapidly, thanks to the wonderful volunteer moderators that help manage the communities.
If you would like to help us spread the word about patient support, please post about us on Facebook, Twitter and Blogs. Pasting in the URL, or Internet Address, of this community will make it easier for others to find us and get the support they need!