Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition. Recognized as a 501(c)(3) non-profit, Ben’s Friends is a grassroots organization run by patients for patients. It is not a top-down, “expert advice” experience but a community offering peer to peer support. The value of this approach is evidenced by our hundred volunteer moderators, who are either patients themselves or relatives of patients, who believe in the mission and are willing to invest their time and share the knowledge and insights they have gained with members arriving daily in need of help. Ben’s Friends considers the patient perspective in everything we do.
Focused on Patient Support
There are some amazing non-profit organizations all around the world doing fantastic work to raise awareness, raise money, and provide medical information to patients, friends, and family. We decided to complement their work, rather then duplicate. Therefore, we chose to concentrate all of our efforts on learning how to create and run compassionate, responsive patient communities.
Our communities have proved a valuable guide for members seeking to understand their diagnosis, symptoms, and their treatment options. Ben’s Friends provides a friendly environment that allows for bonding. Many a lifelong friendship has been forged on our communities. But most of all, Ben’s Friends is successful because it changes our members’ relationships with their disease. “I have the disease; it doesn’t have me” is a mantra often repeated by members, as they gently guide each other toward effective coping mechanisms and enable our patients to live the fullest lives possible.
Why Rare Diseases?
Global Genes reports that 350 million people worldwide suffer from a rare disease, with an estimated 30 million in the U.S. and an additional 30 million in Europe. So, while each separate disease is rare, being a rare disease patient is not. In fact, 10% of the population in the U.S. is living with a rare disease. There are over 7,000 types of rare diseases, from the extremely rare (only a few documented cases worldwide) to the “common” rare diseases (about 350 conditions, covering 85% of rare disease patients). When factoring in patients with chronic conditions, which may need the same type of emotional support and community fellowship as rare disease patients, the demand for online patient support communities is limitless and bounded only by our own resource constraints and capacity.
Why A Butterfly?
The butterfly is a fitting symbol for our support communities, as it denotes rebirth, transformation and gentleness. Our members often write of having experienced a personal transformation that is truly life-altering, which can reveal new insights about the world and about themselves. Our communities offer a way of helping each other move forward with positivity during the difficult transformation that illness can bring.
It started with Ben, a stroke, and AVMSurvivors.org
In 2006, Ben Munoz suffered a rare form of stroke called arteriovenous malformation (AVM). Unable to find the support he was looking for on the internet during his lengthy recovery, he created a patient community AVMSurvivors.org in late 2007 to find others like him.
Patient Communities for Others
When Ben started to connect with other AVM survivors, it became apparent that “community is the best medicine.” His good friend Scott Orn (and later Eric D. Kroll, Haley Gallant, John Stamler, and hundreds of volunteer moderators) joined Ben in founding BensFriends.org, with the sole focus of creating and operating safe, compassionate communities for people who need them (including patients and their families & friends).
Since those early days, Ben and his friends have started dozens of communities through Ben’s Friends, helping hundreds of thousands around the world. We now have over 30 communities providing support for patients and caregivers dealing with conditions from Atrial Septal Defect to Von Willebrand’s Disease. We have approximately 50,000 members around the world, and over 100,000 people visit our sites each month.
A Message From Ben
“I’m forever thankful to the neurosurgeon for saving my life. However, each time I left the doctor’s office or the hospital during my treatment and recovery from the brain hemorrhage, I felt lost and lonely. How am I supposed to know what to do next? The first few months after my brain surgery was an emotional roller coaster.
The turning point came when I was put in touch with a friend of a friend who had been through a brain hemorrhage like mine and knew what it was like. We spoke for a long time and he answered the million questions that I had about treatment and recovery. I wanted desperately to connect with others who also had an AVM brain hemorrhage and talk more about the emotional aspects of this life-changing experience.
I was able to put together a good enough web site to invite a few people from a mailing list to come join me in an open discussion of what we were going through. I was so thankful to connect with others who knew what I was going through and members who joined felt the exact same way. It became apparent as the community doubled in size, again, and again, that we had created something special.
We wanted to share that emotional connection with patients of other rare diseases, so we created Ben’s Friends.”