Categorized | Social Entrepreneur–Turning Adversity Into InspirationSupport Communities for People with Rare Diseases

Ben Munoz

About builds and manages patient-to-patient support communities for people with rare diseases. All patient support communities are free for members to join, sponsored by foundations and advertisers, and run by volunteer moderators. was launched in November 2007. Since then, has grown from one patient community to 24 patient communities, and from 10 members to nearly 7,000 members today. Every month, more than 200,000 visitors log on to one of our websites.

What is the reason was founded?

In 2006, while I was an MBA student, I suffered a stroke caused by an arteriovenous malformation (AVM), which is something like an aneurysm. Before suffering this stroke, I had never heard of an AVM or known anyone who had experienced one. I survived the stroke, but still had to deal with recovery, brain surgery and two years of waiting for the AVM to heal.

I couldn’t find the support I was looking for on the Internet, so I started my own online support group, Through this online support group, I met many AVM survivors who became like family to me.

My friend and classmate Scott Orn suggested that there were probably other people in my shoes, people with a rare medical condition who would like to connect with others like them. Together, we founded and have since been building online support communities for people with rare diseases.

Who is your service for?

We offer patient-to-patient support communities for people affected by a rare disease. The service is free, and run by moderators who have the disease and understand what members are going through.

Do you have a company blog?

We blog several times a week at and tweet daily at We also have a YouTube channel at

Although everyone these days has a blog, don’t underestimate the amount of work necessary. Not only does it take time to write each blog, but you’re not going to see a lot of traffic until you’ve been doing it for at least a year.

What is the one thing that you did right?

Something we’ve always done well is our willingness to experiment. We are always eager to try something new, stick with what works and abandon what doesn’t work as well.

We created based on a hub-and-spoke model. Each patient support community runs as a separate website with its own group of community moderators. As such, we are able to tinker with the features and content of one community to see the effects before we roll something out across the board.

Additionally, we created a community dedicated to the moderators, so they can share ideas and best practices, and help each other.

Not every business has this luxury, but you can simulate this using Google Web Site Optimizer (, a free tool from Google.

What is the one thing that you did wrong?

We are now very well organized—we have regular meetings with prepared agendas, use collaboration tools like Basecamp and Google Documents, and set regular goals to keep us focused. Early on, however, we had none of this in place, and it slowed us down. My advice for other social entrepreneurs is to get organized as soon as possible.

How do you keep costs low?

Basecamp really helps with this, as were a completely distributed work force. Everyone works virtually, so were constantly on email, the web and phone. We will meet in person, as well, which helps maintain our personal connections, but were able to all operate in the cloud so to speak in order to keep overhead down. We also could never do all of this from scratch without the help of our amazing volunteers.

We have had many opportunities to increase expenses, but thanks to the

discipline of our partners, we’ve decided to focus on community over growth. It has given us the ability to stay focused on our members’ needs, instead of covering our overhead. Growing slowly has also given us time to learn every aspect of what we are doing without having to worry about running out of funds.

One of the biggest secrets of our success is the talent pool available from We’ve used the freelance talent from for social marketing, website programming, graphic design and data analytics. Since most online enterprises these days are bootstrapping it, getting the most from your dollar is critical. We’ve learned some tricks over the last couple of years to recruit great talent from and give them work they enjoy at a wage that makes everybody happy.

What can you tell other entrepreneurs who are deciding to make a difference?

The biggest surprise is when your enterprise has a social mission, you may be pleasantly surprised about how generous people are with their time and energy. People genuinely want to help others. The sooner you realize this, the more people you can help by getting others involved in fulfilling your mission.

What book(s) have you read that others should read?

Anything by Seth Godin is good for strategy and ideas. Anything by Tim Ferriss is good for tactics and implementation.

Any final comments?

Id just like to give my appreciation to for giving us this opportunity to share our story. Our mission is to ensure that everyone with a rare disease has a safe place to connect with others like them. Anyone who helps spread the word is contributing to this, and on behalf of all rare disease patients around the world, thank you.

Ben Munoz

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