We’ve done a lot of great interviews for PR Nonsense—from Red Mango to Chatfé to Boloco. Now up: Ben Munoz, founder of BensFriends.org, a social enterprise dedicated to providing safe and supportive online patient communities for anyone affected by a rare disease.

I learned about the organization, which is comprised of 23 different patient-to-patient networks and has more than 6,700 members, this past summer through word-of-mouth, and recently spoke with Ben about how he and the patient community moderators have and are continuing to spread the word to the thousands of people worldwide affected by rare diseases. (To learn more about Ben’s story and the patient support systems launched, check out this article; you can also connect with BensFriends.org on FacebookTwitter and YouTube.)


BB: What steps did you take to first connect with other AVM survivors?

BM: Prior to starting AVMSurvivors.org, I tried talking to doctors, nurses, family, friends and even strangers—really anyone who might know someone to talk to who’d gone through what I did. I searched the web to find a community, but nothing was out there. Consequently, I started AVMSurvivors.org and asked various medical professionals to refer new patients they had to it. I then focused on creating a site that showcased my research on the disorder and enabled people to connect to share their experiences, offer treatment recommendations, etc.


BB: What strategies are you employing now to reach other patients with rare disorders and inform them about BensFriends.org?

BM: We (myself and the patient community moderators) are focusing on search engine optimization to ensure that we have a high Google rank, so others don’t face what I did—not having anyone to speak with, at first. We’re making sure that various medical message boards contain the BensFriends.org URL, and just as you learned about it, finding word-of-mouth through family, friends and other peers has been critical for spreading the word. BensFriends.org is also utilizing other social networks to reach out to people; every patient community has its own Facebook group. Twitter has also helped generate a lot more traffic and members with quick, compelling announcements. Further, we recently launched a newsletter that focuses more on the stories of our amazing members. Engaging the members we already have has been great, as they’ve served as their own community ambassadors and drawn others to BensFriends.org.


BB: How would you like to see BensFriends.org evolve in the future?  How do you see social networks and other web technologies impacting BensFriends.org?

BM: I’d really like to continue the growth pattern BensFriends.org has seen this year in terms of the number of patient communities and members. We’d like to use other social networks like Facebook to further enhance patient-to-patient communication and improve member services. I could go on and on as we have big plans, but want to get it right so are taking every step at a time.  In general, we just want to ensure we continue moving towards our mission of ensuring everyone with a rare disease has a safe place to go and connect with others like them.

This post was first published on March Communications’ blog, PR Nonsense, by Beth Brenner and may be viewed here.