Antidote, a digital health company who aims to accelerate the development of breakthroughs treatments, making medical research accessible to all, held a roundtable discussion named, “How are Rare Diseases Treated?: An Advocate Conversation”. Ben Munoz, Co-Founder, Ben’s Friends joined the conversation as they delve into the role of medical research in the rare disease space. Read more from Antidote’s post.
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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.
BioBlast Pharma will match each dollar up to $5,000 donated to Ben’s Friends for the migration of the Oculopharyngeal Muscular Dystrophy (OPMD) and Spinocerebellar Ataxia Type 3 (SCA3) patient communities to a new online platform. BioBlast is a clinical-stage global pharmaceutical company focused on the research and development of treatments for people living with rare diseases.
“We are focused on improving the lives of people suffering with symptoms of rare genetic diseases, like OPMD and SCA3,” stated Paul Firuta, Chief Commercial Officer, BioBlast, “and are excited about the opportunity to support Ben’s Friends in creating a new online homes for the OPMD and SCA3 communities.”
Ben’s Friends is hoping to complete the migration of the OPMD and SCA3 communities early 2016.
Ben’s Friends co-founder Ben Munoz shared in CMX Hub how to build trust from patients with rare diseases.
According to Munoz, making members feel welcomed is key. The welcome is the most important piece of the community membership cycle. When a new member joins, they are warmly greeted by lots of veteran members who trusted the community and so new members feel the warmth and friendliness. Read more from this article.
Rare disease “affect more people than the biggest headline-grabbing diseases on the planet.” View this infographic produced by CrowdMed to see the stats:
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
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 firstname.lastname@example.org
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 email@example.com.
3. Help Spread the Word: help us spread the word about BensFriends.org 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 firstname.lastname@example.org.
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 BensFriends.org 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 Smile.Amazon.com, choose “Bens Friends” (Houston) as your charity of choice, then whenever you shop on Amazon make sure to go to Smile.Amazon.com and help thousands of rare disease patients at BensFriends.org.www.youtube.com
“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