Dear PSC friends,
As the year ends, I reflect on how far we have come helping patients with rare conditions and contemplate on how to further our impact in their lives. It’s really a story of an internet miracle that we have started and you can have a part in keeping it going!
Six years ago, I created AVMSurvivors.org while recovering from a rare bleed in my head by getting in touch with a handful of other patients. This small group has grown today into a closely knit community of over 6,000 AVM survivors comparing notes and helping others with the rare condition.
My friend Scott was blown away by how our group provided support with each other, offered immediate access to information for newly diagnosed patients and helped quell their fears. It was his idea to do the same for patients of other rare diseases. Putting together our own resources plus the generous financial support of some of our friends, we started Ben’s Friends Patient Communities in early 2008, with the mission of building online support sites for every rare disease.
Today, we now have 30+ support groups with 30,000+ members and 80,000+ visitors every month. Most, if not all, of our members have never before spoken to anyone with their rare disease in their entire lives. Now, they don’t feel so alone anymore, finding hundreds of people experiencing the same emotions they have.
Our vision as a social enterprise is: a community for every rare disease. Over 100 community moderators, patients and survivors themselves, share this vision with us and volunteer their time for free — no moderator or member of the founding team takes a single dollar in compensation.
Unfortunately, there are software costs and other operation costs to help 80,000+ patient/visitors. How do we finance the activities?
Generating revenue for online patient support sites for rare diseases, including Ben’s Friends, is difficult because the patient populations are so small and fragmented that sponsors hardly pick us up on their radar unless we knock on their doors. Charging a membership fee is out of the question because most of our members are on disability and money is very tight for them.
Scott and I have contributed some of our own money because we believe in the cause so strongly. Our yearly fundraisers on Indiegogo have rallied around $20,000 in donations from our personal friends and some patients who were in a financial position to contribute.
Still, there is so much to do with very limited resources. Monthly, BensFriends.org spends over $2,000 for the upkeep of the communities. Our inbox is full of messages from patients asking us to start a support group for them. In fact, we have a waiting list of over 100 support groups that we could start tomorrow if we had the funds.
You can help by volunteering your time and/or making a donation to our fundraiser at
Even a small amount can go a long way. A $3 monthly donation would help approximately 40 patients every month. If you have a loved one touched by a rare disease, we can start a community for them. We could also use help getting the word out by telling your friends and family about the fundraiser.
Incidentally, please do not feel any pressure to donate. We are grateful for everything you, our members and moderators, do to help other members in need of help. Please continue to contribute comments and a video and your experiences, knowledge and support on all of our sites.
Yes, you can help keep the miracle going. If you have any questions, please feel free to email or call me through the numbers below.
P.S.— If you want to see a video from a member who has been touched by Ben’s Friends, please go to our Ben’s Friends video channel at http://www.youtube.com/bensfriendsvideos. You can also find tons of patient testimonials on our blog at http://blog.bensfriends.org/.