Many communities are known for bringing together people from around the world interested in the same topics. What happens when your topic isn't just an interest, but a life-changing illness that no one else you know has suffered from? That's where Ben's Friends Patient Support Communities come in. Started in 2006 by Ben Munoz to find other people suffering from a very rare condition he had been diagnosed with, the original community has grown into a stunning network of over 30 dedicated rare disease communities. John Stamler (pictured right), a member of Ben's Friends since 2010 and survivor of Atrial Septal Defect, took some time to speak with us about this inspiring and encouraging network of communities. 

Tell us a bit about Ben’s Friends Patient Support Communities.

From the site: BensFriends.org is an international organization with a network of online communities that provide support for people struggling with rare diseases. It was founded in 2006 by Ben Munoz after he suffered a serious stroke at age 29, caused by a rare condition called an AVM. During his ordeal, Ben realized how online communities could help support those suffering alone. Since then, Ben and his friends have started dozens of communities helping tens of thousands around the world.

John Stamler: When a person is initially diagnosed with a rare disease, it’s vital for them, their family and their friends to know that they are not alone. Ben's Friends has the ability to change these people’s lives in ways that I had previously never thought possible, by providing a safe environment within which they can talk, swap stories, and connect with other people affected by a rare disease. They might be in the middle of nowhere, in geographical terms, but they don’t need to feel isolated. They log into the site and can unite with people from all over the globe.

What was your biggest challenge in starting your communities?

We do find that we are regularly approached by people eager to start sites for different rare diseases to which they have a connection. In these cases, we direct them to our incubator site until we can get more traction and resources for their particular condition and grow a membership for it. Taking a community from zero to 100 is tough and challenging, but once you get there, from 100-500, it takes off and from 500 on, the community is self-sustaining. Finding the right moderators who are connected to the condition and motivated is a key component of setting up a successful community and well worth any challenge it presents in the process!

With such niche audiences, how do you find members or make it easy for members to find you?

There are several ways we accomplish this. Word of mouth: Twitter’s been hugely powerful, as has Facebook. We also rank highly in Google and Yahoo searches. We’ve garnered great press from the likes of TechCrunch, the Houston Chronicle, Cleveland Clinic, Providence Journal, Harvard Business Review, and Eli Lilly's own blog. We’ve been featured in various podcasts and on social media influencer lists. Our monthly newsletter reaches an expanded network of around 10,000 subscribers. Our partners also provide valuable exposure and our members also push the communities at their doctors’ offices. Some members run marathons in support of Ben’s Friends and one rare disease survivor even adorned his own race car with our official logo (pictured right). It’s been all about good press, good exposure, and the power of social media. A lot of people find us on Facebook, where we have groups for various conditions in addition to the main Ben’s Friends Facebook page. Some people search on Facebook and find us that way and we can then direct them to the main support pages, where they have significantly more opportunity to benefit from personal interaction and garner useful information. In all, it’s a multi pronged approach to make it as easy as possible for people to find us and get the support they need.

Can you tell us a bit about the Moderator Only Network and how you manage over 130 moderators across your networks?

As you know, our moderators are pretty amazing people. Most have the condition they moderate for or are touched by the condition through a relative or friend. The moderator-only network is a way to connect these people. The newer moderators can learn from the more experienced ones. They can find best practices, examples of how to welcome members, how to make them feel good, and see previously successful discussions/ideas/etc. Some sites have taken off more rapidly than others and therefore can give advice on the best way to go from zero to 50 and 50 to 100 and how to stay focused and not get discouraged. It can be frustrating and discouraging when starting a new community, but knowing that you’re not alone and that you can ask another moderator's advice is powerful. Moderators also like to help across other conditions to welcome people and that’s been great. You, as a new member, don’t just join a site and get left to flounder. You are welcomed, given an abundance of information about helpful discussions, introduced to moderators you can talk to, and everyone welcomes each other. It’s one big bear hug, if you will. The moderator role is a powerful one and these people devote a lot of their time to our sites. Them knowing that their hard work is appreciated by us is so important, whether that's simply sending a personal message to them or an email or a letter. These volunteers take a huge amount of pride in what they do for us, day in and day out. They’re the most amazing individuals you’ll ever meet. Without them, we couldn’t cope.

What are some of your favorite success stories or testimonials from community members.

We have 30,000+ inspirational stories (one for every member!) and I simply couldn't pick just one. Every day, I read new member stories and it’s mind boggling what these people go through. One thing we continue to hear is the phrase “I didn’t know anyone else had this condition.” Recently, we sent out an email to all of our communities with questions for a possible e-book. Within 36 hours, we had over 200 submissions from people telling their own story. The e-book will be hugely powerful when it comes out as it will be those people’s stories, told in their own words.

You have an impressive list of partners. Can you tell us about how those partnerships came to be? Did organizations approach you? Do you have members who perform outreach, etc?

We’ve found partners via similar means to those ways that members have found us (social media, press, etc). People see articles and reach out. It’s been a bit of luck and bit of word of mouth, a bit of social media outreach; a combination of everything. There are a few people who are more on the outreach front but we’re a super flat organization, so if people want to reach out, whether it’s members or moderators or anybody, or people reach to us and say we want to talk; we’re open to anything. We’ll talk to anybody, but we’ll always protect our members. They trust us completely, and we’ll never break that trust. We don’t sell any data and members feel (rightly) that anything they provide on the site is safe. We’ll never give up that information. At the end of the day, they come first and making sure they’re not compromised with any partnership is crucial.

In a recent Harvard Business Review article, co-founder Scott Orn refers to Ben's Friends as a capital efficient social impact organization. Could you tell us a bit more about this concept?

When Scott and Ben came up with the idea of a network of communities, they were on a very tight budget and they needed to be efficient. Instead of creating a lot of unnecessary infrastructure, they used off the shelf and white label products (Ning, Basecamp, and oDesk, primarily) to launch communities quickly, efficiently and effectively at a pretty low cost. We’ve been able to make a huge impact with a small budget and without expensive infrastructure.We’ve also been able to utilize crowd funding through IndieGoGo. Last year we raised $30,000 through them and they’ve created a lot of press for us, which was extremely helpful. Crowd funding has been another efficient and inexpensive way to raise money for our organization.

Since the launch of Ben's Friends' first community AVMSurvivors.org in 2007, over 30 more rare disease communities have been launched. What's next? Are you continuing to scale the network?

We will continue doing similar things - launch new communities, find new members, and create partnerships with helpful member services.  But we will expand and scale as you alluded to.  That’s why we decided to become a non-profit (we are now a non-profit and awaiting official 501c3 designation).  Individuals and organizations love what we do but prior to becoming a registered charity they could not tax-deduct any donations that they might want to offer us. We’ve already been approached by a number of influential and affluent people and organizations, so once the 501c3 comes through, we will be able to do a whole lot more.  Ben started this to help improve people’s lives. We want to continue that by growing and using Ning to grow more rapidly. We have the structure and the moderators. Now we’ll go from helping 50,000 people per month to many more.

What’s the most surprising thing you’ve learned from your growing network?

It’s less about surprising, more about exciting as you see the communities, interaction, and the traffic grow. Initially it’s no different than going to school: there are a lot of people who hang at the back of the room, but don’t really participate. Then once people start to feel comfortable and start writing and sharing what’s going on in their lives, what’s impacted them… that’s when you see the magic happening on communities... that's when you see them feeling better about themselves. Life’s tough for a lot of these people, but being able to interact with others and seeing a little bit of hope and positivity and people corralling around each other is what it’s all about. When you join a Ben’s Friends community, you’re joining a lifelong, caring family as opposed to something transient. Living with these conditions (sometimes forever), can be tough and debilitating. Knowing that they’ve found a place they can connect with others, members feel less lost and find people they can relate to. I hear that day in and day out and it's so encouraging.

What’s the best piece of advice you have for someone looking to start an online community?

In our experience, it comes down to finding the right moderators that can work together as a team and grow the community while being supported by the organisation as a whole. They need to know that they’re not alone; they can turn to the moderator community and to us. Growing an online community isn’t easy and it can be frustrating, but once you see it take off and read the amazing member testimonials, it’s incredibly rewarding.

 

Thanks John. We're really inspired by all you and the team at Ben's Friends do. For more information about Ben's Friends Patient Support Communities, visit the links below.  

Additional Information about Ben’s Friends 
Website: http://www.bensfriends.org/
Follow Ben’s Friends on twitter @bensfriends 
Here is a 60 second video that explains organization: http://youtu.be/YBeRFnJkleU
Blog has tons of amazing Patient Testimonials: http://blog.bensfriends.org/
Here are a couple sample networks where the real magic happens: 
http://www.livingwithtn.org
http://www.avmsurvivors.org/
www.livingwithataxia.org
www.lifewithlupus.org
and many more as you can see from the main website – www.bensfriends.org

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