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Ben’s Friends Newsletter November 2016




Hi, everyone, I hope this message finds you and your loved ones well.  

Ben’s Friends Patient Communities was founded in 2007; I had just suffered a rare form of brain hemorrhage (AVM) and was looking for online support during surgery and recovery.  I couldn’t find the support I was looking for, so my friend Scott and I started the first Ben’s Friends Patient Community, a support community for AVM survivors.  Since then, Ben’s Friends has created dozens of patient communities and helped connect hundreds of thousands of rare disease patients just like you.  What makes us different is that we are 100% non-profit, created by patients, for patients.  Thank you for being a part of the largest and most caring network of rare disease patient communities on the internet!

–Ben Munoz

Founder, Ben’s Friends /

Ben’s Friends’ Mission

To ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, have a safe and supportive place to connect with others like them.


Our patient communities used to run on software was originally built almost 10 years ago!  It took over a year of research and hard work but we finally moved our communities over to a newer and more modern software platform. 

The tens of thousands of people who visit our 30+ patient communities every month now have a modern-looking site that is also much more mobile-friendly.  Search is better, discussions are more organized, and the sites are much faster to load.  

You DID it!  Our new online home is 100% thanks to you for volunteering or donating to help rebuild our online home.  Extra special thanks goes out to the Mod Support team for their countless hours of behind-the-scenes work and coordination.

What do you think?  Email me at

Having a rare disease or chronic condition can be quite isolating.  Does this sound familiar? Your friends and family have never heard of your condition.  Your boss or coworkers cannot “see” anything wrong with you, so they dismiss the severity of your condition.  Your healthcare provider gives you a diagnosis, but can’t tell you what to expect.  The stress and fear can be overwhelming and nobody seems to understand what you and your family are going through.   

Patients and their caregivers may feel like they are alone until they find groups such as Ben’s Friends where they can connect with others who have been on their journey.  This is a place to gather information from those who have walked your path, and to share guidance with those who are newly diagnosed and their families.  

Sharing what you know about your condition is vital to other patients and families, but it is also important for those who do research on your condition to hear your voice.  Pharmaceutical companies, device manufacturers, university researchers, and those focused on the economic and social impacts of living with rare and chronic conditions all want to hear about you to understand the way your condition influences your decisions and impacts your day-to-day experiences.

Rare Patient Voice was created to provide patients with and their caregivers with an opportunity to voice their opinions through surveys and interviews to improve medical products and services.  Founded in 2013, Rare Patient Voice has over 100 different panels representing over 30,000 patients and caregivers in the US and Canada.  The company’s vision is to be the catalyst for patients in all disease categories to share their experiences confidentially with those who can make a difference for those living with rare and chronic conditions.

Rare Patient Voice meets patients and caregivers at events such as conferences, walks, and educational forums, and invites them to join research panels.  Participants receive a gift card for joining the panel, and when they participate in a study, they receive $100 for an hour of their time.  Over the past three years, Rare Patient Voice has paid patients and caregivers over $1 million dollars for sharing their opinions.  Participants benefit from the process on several levels, as one participant noted, “The money is nice, but getting our voices heard is amazing.”

If you would like to share your experience, please join Rare Patient Voice at

This is a sponsored post. CLICK HERE to learn more about sponsored posts.

Just the Numbers

Communities: 34

Friends: 30,000+


Last month, launched a Indiegogo fundraiser to help upgrade their community.  The community raised over $2,000, smashing the goal of $500.  Amazing stuff.

If you would like to launch a fundraiser for your community, we can take care of the details.  Just email Todd Hall at

How You Can Help

If your community has made your life a little better and you would like to give back, here are some ways you can help.  Email to get started.

Become a Community Greeter

  • Say hello to new members and be available to answer any questions they may have. (0-1 hour per week)

Become a Community Moderator

  • Organize discussions and help make sure the community warm and friendly for everyone. (2-3 hours per week)

Write a Newsletter

  • Write content for our quarterly newsletter or for one of our monthly newsletters. (1-2 hours per week)

Manage Social Media

  • Post inspirational content to thousands of followers on our Twitter and FB pages. (1-2 hours per week)

Email if you have some spare time and would like to give back to patients.

Contact Us


Why Ben’s Friends Moved Its Patient Support Communities to Discourse from Ning

Ben’s Friends History

When we started Ben’s Friends Patient Support Communities in 2007, our mission was to provide support for the millions of patients with rare diseases across the world. Ben Munoz, our co-founder, had suffered from a rare AVM, kind of like a brain aneurysm, and he couldn’t find a single person in the world to talk to about his condition. Before Ben’s Friends, the lack of information and personal connection meant that patients with rare diseases had to suffer through their disease alone.

We knew that by leveraging the power of the Internet, we could bring together patients across the world. We were recent Kellogg MBA’s with very little money and we had an inclination that the communities would have a hard time monetizing. That meant that venture capital funding would be difficult to find and we were better off going the 501C3 non profit route.

In 2007, Ning Was a Godsend

We were resourceful and found Ning. At the time, Ning was piloted by a team that included Marc Andreessen, the Co-Founder of Netscape, and was backed by some of the finest venture capitalists in the world. Ning had the resources that we didn’t to build beautiful and functional social networking software. To Ben’s Friends, Ning was a godsend and we enthusiastically built over 35 distinct rare disease patient support communities on it.

Ben’s Friends flourished and we became one of the largest communities for rare diseases in the world. We recruited a volunteer moderator group of hundreds of fellow patients and loved ones that eventually provided support to millions of patients in need. The volunteer moderators are the real heroes of Ben’s Friends. They worked tirelessly and for free to make sure others didn’t suffer alone.  

Ben’s Friends Needed A New Home

As the venture capital dried up, Ning was acquired by different corporate entities. Ning became severely underfunded and the quality of the service suffered. Ben’s Friends needed a new home.

Discourse Welcomed Ben’s Friends with Open Arms

After scouring the Internet and evaluating tons of software services, we chose Discourse. I’m happy to announce that with the heroic efforts of Jeff Atwood, Erlend Soghe Heggen, Neil Lalonde, Arpit Jalan and the rest of the Discourse Team,  along with Tom, Rose and the rest of the Ben’s Friends Team efforts, Ben’s Friends is fully migrated off of Ning and the communities are humming on Discourse. Thank you Discourse!!!

Why did Ben’s Friends Choose Discourse?

Discourse is open source software. It’s a new company called “Civilised Discourse Construction Kit Inc.” (CDCK for short) formed by some of the same people who used to work on Stack Exchange, which is a very successful creator of online Q&A communities. Discourse is not the same software as Stack Exchange, but many of the lessons learned through that experience have been incorporated into Discourse. Discourse is constantly being improved by a cadre of open source developers. Ben’s Friends will be a huge beneficiary of their collective efforts.

The architecture of Discourse communities is brilliant, which leads to a very simple user experience for Ben’s Friends members. The software is hosted for a small fee (cheaper than Ning), which means Ben’s Friends doesn’t have to hire expensive IT staff or mess around with servers. Ben’s Friends on Discourse just works.

Discourse’s Export/Import Tool Greatly Simplified Migration

Jeff, Erlend, Neil Arpit and Team went the extra mile for Ben’s Friends by building an information Export/Import from Ning. That meant that the millions of posts, pictures and discussions on the Ben’s Friends communities were not lost. Members can find their old Ning content on Discourse! The Export/Import tool and support ended up saving Ben’s Friends hundreds of thousands of dollars.

Early Feedback on the Migration

The migration has been complete for only a week and we’re already seeing greater levels of interaction. Members are still getting used to the new format but they are sending us lots of encouraging notes. One immediate improvement has been the mobile interface. Over 50% of Ben’s Friends traffic comes from mobile devices and the new Discourse interface is easy to use.

Thank You Discourse

The transition from Ning to Discourse will be an inflection point for Ben’s Friends. Our donors underwrote the project with more than $40,000 of contributions. Many of those contributions came from community members and patients. It’s rewarding to be able to tell them that the migration was successful and Ben’s Friends can get back to the business of supporting patients and building new communities.

Thank you Discourse for letting Ben’s Friends focus on what we love – bringing support to patients with rare diseases across the world.

If you’re inspired by Ben’s Friends mission and the hundreds of volunteer moderators that make the support communities successful, you can support our growth by donating.

Is the Price of Generic Drugs in the US Going Up?

A 1000% price hike in the cost of generic drugs? Can that be true? According to this recent article from the AARP Public Policy Institute (PPI), 27% of the generic drugs prescribed last year went up in cost. Follow this link for the full story:

The Cost of Generic Drugs Spike

How Can I Help?

Thanks for your interest in making a difference. On behalf of anyone living with a rare disease, we thank you.

Ben’s Friends is a 501(c)(3) non-profit, and your donations is tax-deductible.

1. Help a Friend or Relative: if you know someone with a rare disease, forward them our web site or ask them to contact us at

2. Connect Us: if you have a connection you think would be interested in helping us or partner with us (PR consultants, reporters, medical professionals, hospitals) please let us know at

3. Help Spread the Word: help us spread the word about or a specific patient community. Follow us on Twitter at (@bensfriends). If you have marketing or PR expertise, we would love to hear your ideas about ways to spread the word and help more people. Contact us at

4. Help Us with PR: our biggest need is to get this story in front of reporters and bloggers. If you have a blog, blog about us. If you know a blogger, send them a link to our web site.

5. Help Us Increase Our Google Rank: most people find us via Google. If you operate a web site, linking to helps make our patient communities easier to find for the patients who need us.

6. Ben’s Friends is run by an army of volunteers and relies on donations to fund operations. Please click here to make a contribution.

7. If you shop on Amazon, please sign up for their Smile program that gives money back to Non Profits (at no cost to you). Go to, choose “Bens Friends” (Houston) as your charity of choice, then whenever you shop on Amazon make sure to go to and help thousands of rare disease patients at


Member’s Talk

“I’m excited to be representing such a great organization like Ben’s Friends. Ben’s Friends has helped so many, and we’d love to know how we’ve helped you, too. We’ve seen the numbers grow and grow. Since our first year, our membership has increased from 23 to 50,946! In just the last 5 years our membership has increased an amazing 620%.

We look forward to helping many others, and we can do so with your help and support.”

NEW Executive Director of Ben’s Friends Gretchen Flatau

Continue reading “Member’s Talk”