Scott Orn, BS 99, receives about 25 “thank you” notes every day. They’re from patients and supporters across the world whose lives have been changed by Ben’s Friends, an online community that he and friend Ben Munoz founded to help people with rare diseases find support and share information.
Seven years ago, as Ben recovered from arteriovenous malformation, a rare brain aneurysm, he could not find a single person who had his condition – offline or online – with whom he could talk and connect. As a result Scott and Ben started the first Ben’s Friends community, AVMsurvivors.org. It took off immediately. They then started two more communities, livingwithataxia.org and livingwithtn.org. Soon afterward members began volunteering to help moderate and transform the communities into “kind of a mini-Wikipedia.” Today, Ben’s Friends is the second largest rare disease community in the world, with 33 community sites and over 200 volunteer moderators. In October alone it served 125,000 patients and loved ones and is growing about 10% per month.
“It feels really good to bring so much joy and relief to people across the world,” Scott said. “I could never walk away from that feeling and from the 200+ volunteer moderators who have been on this journey with us. They are the bravest people in the world – choosing to help others while they too are combating their disease.”
Ben’s Friends is also a very efficient nonprofit, with an annual budget of just over $35,000 a year and a waiting list of about 100 communities that people write in asking it to start.
Scott attributes his ability to create such a strong network to his and Ben’s business backgrounds, which have guided their decisions in two ways:
- Using Lean Startup methods: They run many little experiments, keep the burn rate low, and invest as much as possible into the ones with positive results. One such project was the Rare Disease Doctors Database, in which a developer donated his time to create a prototype through which patients could find a doctor who was familiar with their condition. The prototype was met with positive responses from the patients, so it was grown into a more functional database. In fact, LinkedIn.com liked the Doctors Database project so much, they supported it with a $10,000 grant.
- Incorporating organizational behavior principles: They built an organization where volunteer moderators take ownership of their community. The moderators serve as catalysts, greeting new members and policing the community to keep it positive. The moderators then share the best practices within a community of only moderators. Now, Ben’s Friends has an elite group of seasoned moderators who coach and counsel new moderators. Ben’s Friends is organizational behavior for impact, not profit.
Impact of Ben’s Friends
According to the community’s survey, over 75% of the members said that information and relationships they develop on Ben’s Friends positively impacts their treatment decisions. In addition, 80% responded that being part of the Ben’s Friends community makes them feel better and has helped accelerate their recovery.
Scott’s most memorable experience with Ben’s Friends was during one of the nights he was moderating the site, when the nonprofit was still new. He saw a post from a teenager on the East Coast who could not sleep because she had a doctor’s appointment the next morning.
“She was going in for some scary stuff and I knew she needed some kind words,” Scott said. “But before I could type anything, I saw a woman from Australia write back and comfort her. Here were two strangers on different continents connecting in a moment of absolute need. At that moment, I knew Ben’s Friends would help a lot of people.”
Advice for current Haas students
“Use your powers for good. You’ve been blessed with a strong intellect and now through Haas, you have a toolkit to solve tough problems. Make the world a better place. Maybe you’ll make a buck or two, and maybe you won’t. But you’ll wake up every morning knowing you are changing the world and there is no better feeling.”