Ben's Friends Patient Support Community

Ben’s Friends
My name is Ben Munoz and 5 years ago I started an organization called Ben’s Friends (www.BensFriends.org) to build Online Support Communities for Patients with Rare Diseases. Ben’s Friends has grown beyond my wildest dreams! Today we operate 34 dedicated support networks. We bring patients, families and loved ones together to help each other when they need it most. We have 30,000 members and 45,000+ unique visitors a month. Over the last year, we’ve almost doubled in size and have become a massive network of support! We’re incredibly grateful to the 150+ Volunteer Moderators, many of whom are patients themselves that manage each and every support network. Because of our community’s work, people with rare diseases don’t have to be alone anymore!

List of Communities
Acute Disseminated Encephalomyelitis (ADEM)
Attention Deficit Disorder (ADD)
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect (ASD)
Brain Aneurysms
Charcot Marie Tooth (CMT) 

Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry Disease
Fibromyalgia
Glossopharyngeal Neuralgia (GPN)
Guillain Barre Syndrome (GBS)
Lupus
Lyme Disease
Multiple Myeloma
Myositis
Narcolepsy
Nephrotic Syndrome
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Sjogren's Syndrome
Synovial Sarcoma
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases

Ben’s Story
In 2006 while attending Kellogg Business School, I suffered a rare kind of brain aneurysm, called an Arteriovenous Malformation (AVM). I was saved by emergency surgery but 50% of the people who have an AVM bleed are not so lucky. While recovering from my AVM, I couldn't find a single support group in the Chicago area so I built one on the Internet and Ben’s Friends was born. I started Ben’s Friends because I knew how scary, lonely and depressing a rare condition can be.
My condition changed my entire outlook on life and I decided to give back to patients by becoming a doctor. After finishing business school, I enrolled at UofT Austin to complete my medical school undergraduate pre-requisites. I’m happy to report that I finished those classes and I’m now at Baylor Medical School! Baylor is a very prestigious school and I believe Ben’s Friends helped me get in. The Dean called me one day and asked me to “explain this Ben’s Friends organization.” I told him our story, and an hour later the Admissions Department called to offer me a spot.
The first year of medical school has been hard but I love it. I’m balancing school and our work on Ben’s Friends just fine. I’m looking forward to the day I graduate when I can begin treating patients.

More Info on Ben’s Friends
Here is our website: http://www.bensfriends.org/
 
Here is our 60 second video that explains the concept: http://www.youtube.com/watch?=FkagEP37GaQ&feature=player_embedded

A 60 second interview with co-founder, Scott Orn, by Philanthropy.com explaining Ben's Friends: http://blog.bensfriends.org/post/20068505755/video-interview-of-bens-friends-co-founder-scott
 
Here are a couple sample networks where the real magic happens: http://www.livingwithtn.org/, http://www.avmsurvivors.org/
 
Our blog has tons of amazing Patient Testimonials: http://blog.bensfriends.org/