Big Impact On A Small Budget: Ben’s Friends Wants To Build A Web & Mobile Support Network For Every Rare Disease

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There’s a lot of exciting and head-turning technology out there today, and it’s changing our world in a multitude of ways, some more obvious than others — and at a fairly astounding rate. But many of these services, while making our lives more convenient or connected, aren’t necessarily helping people or having an impact at a more fundamental level. There are, of course, many exceptions, and Ben’s Friends is one of them — another example that for-profit, social enterprises can have a big impact even without venture capital, or big budgets.

For those unfamiliar, today Ben’s Friends is one of the largest platforms and support networks for people with rare diseases. Software developer and startup veteran Ben Munoz conceived the idea in 2006, after suffering from a life-threatening and rare form of stroke (as a result of a condition called “arteriovenous malformation”), which led to several years of intensive treatment, radiotherapy and neurosurgery. Unable to find the information or support he was looking for on the Web, he launched a site to find others who suffered from the same (and similar) conditions.

A community of people quickly formed around AVMSurvivors.org, and, joined by his friends Scott Orn, a partner at VC firm Lighthouse Capital, and Eric D. Kroll, the founders started Ben’s Friends to apply the concept to other diseases. In 2012 alone, the platform added seven new patient support communities to bring its total to 33 (which is now 35), allowing people to connect with others who share the same conditions or symptoms, whether it be in networks like “Living With Narcolepsy,” Traumatic Brain Injury or Guillain-Barre Syndrome.

The concept is similar in practice to that of a network called CureTogether, which was acquired by 23andMe last year. The difference between Ben’s Friends and other startups with similar ambitions, Orn told us recently, is that each disease has its own dedicated network and site. Everything on those pages, he says, revolves around that particular condition and the community of people who suffer from that condition. In turn, Ben’s Friends is volunteer-driven, with support communities adding content, resources and moderating each site themselves. The network of volunteer operators has grown to several hundred, Orn says.

The technology behind these sites isn’t necessarily new or sexy, originally built using a combination of Ning and Basecamp to keep the costs of hosting, scaling and project management low. And the community isn’t enormous, either. Ben’s Friends today only has about 30,000 members, but the engagement is high and the information collected by its community on these rare diseases is extremely valuable.

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But it works, Orn says, because “the entire network is powered by volunteer moderators. We have 150+ people who keep the networks humming. They are also patients and understand what members are going through. They tell us that becoming a moderator changed their relationship with their disease. It took something negative and turned it into a positive.”

Comparatively, CureTogether took arguably an even greater quantitative approach to its community (which is what 23andMe found appealing), while Ben’s Friends has focused more on providing this kind of support — on making it easy for people to find and make those critical emotional connections with others who’ve experienced the same conditions. Of course, the importance of that shared community is something that holds true far beyond the scope of rare diseases and is as old as the earliest Web forums and, well, offline communities well before that.

Orn tells us that the look and feel of the site is owed to an approach the founders adopted early on: Capital efficiency. Monetizing rare diseases just isn’t an acceptable business model, Orn explained in the Harvard Business Review, which is why the founders felt they couldn’t justify raising venture capital. For it to work, everything had to be free and scalable, while avoiding as many fixed costs as possible. Since 2010, they’ve raised about $65K in donations from foundations, members and friends, as well as by running a campaign on Indiegogo — bootstrapping the rest of the way.

Screen shot 2013-05-31 at 7.39.14 PMAnd, today, Ben’s Friends is launching its first native app (for the iPhone) to give patients around-the-clock, on-demand access to support groups while on-the-go. Reflecting macro trends, the founders say that mobile traffic to the site has increased significantly over the last year and now makes up over 25 percent of total traffic as patients turn to their mobile devices to access support groups and health info.

People with rare diseases also tend to find themselves spending a lot of time in waiting rooms at doctor’s offices, hospitals and clinics, making an iPhone app a fairly natural extension of the platform. Accessing support groups and relevant information at the time of diagnosis or surgery helps reduce anxiety, fear and figure out the right questions to ask. The same is true of Cancer.net’s iOS app (and these patient support apps), as well as more information-centric health resources like HealthTap, HealthKeep, HealthGuru and more.

To that end, Ben’s Friends has collected over 2,000 recommendations for doctors who specialize in rare diseases, which will be available in the app’s next update, coming soon. Recommendations like these are particularly critical for those with rate diseases, the founders explain, considering how frequently they are misdiagnosed. Naturally, being referred to a doctor who is aware of rare symptoms and conditions can potentially reduce the chance of being misdiagnosed.

“We never wanted to become one of those nonprofits that have massive overhead and have to spend half of their time raising money,” Munoz says. “We thought of it as a little software startup … in a garage eating Ramen noodles and peanut butter. How do we do it cheaper? How do we automate?”

And so far, it’s been working.