When a person is initially diagnosed with a rare disease, it’s vital for them, their family, their friends and their caregivers to know that they are not alone. That’s why, Ben’s Friends was founded in 2007 by patient and entrepreneur, Ben Munoz.

It was after he suffered a serious stroke at age 29, caused by a rare condition called an AVM, that Ben realized the importance of online support and how this kind of communication could impact others and help the not to feel so along.

Since then, Ben and his friends have started dozens of communities helping tens of thousands around the world.

The website provides a safe environment within which patients can talk, swap stories, and connect with other people affected by a rare disease. They might be in the middle of nowhere, in geographical terms, but they don’t need to feel isolated. They log into the site and can unite with people from all over the globe.

To date, BensFriends.org has 35+ online support group communities. Patients who don’t see their disease listed can easily create  their own community within the site’s infrastructure. A wait list of almost 165 disease-based groups are scheduled to launch fully—though many of these groups can be found at the side inside their “incubator” (https://rarediseases.bensfriends.org/groups ) as the communities develop and grow.

The organization was recently established Ben’s Friends as a 501(3)c nonprofit organization, opening the door to foundation funding and corporate philanthropy while ensuring individual donations can be written off as tax deductions.

The site has recently released  multiple new projects including a doctor database—composed of over 2,000 member-recommended doctors and hospitals, an ebook to be used as a tool for those with rare diseases, a robust social media team to optimize the organization’s presence, a moderator support team to instruct and guide new members on how to use the site, and launched it’s latest support module for Addison’s Disease.

The organization was also named the official charity of the Cleveland Marathon to be held on May 18, 2014.

To see a sampling of communities from Ben’s Friends see here.

1 thought on “Bens Friends Brings Unique Patient Communities to Rare Patients”

  1. I can honestly say I was lost when I found http://www.chiarisupport.org. The Ben’s Friends Chiari Malformation Discussion Forum. Like many people with Rare Disorders I had been through the ringer. It took me 5 years and 51 specialist consults just to get a correct emergency diagnosis and have 16 hr emergency Brain & C Spine surgeries. This was necessary & urgent because I was becoming a quadriplegic. It took me an additional year just to recover from the surgeries because they were so extensive. My whole life inverted and everything I had planned and worked for disappeared. No one understood what I was going through not even 99% of medical providers. I even lost myself. Then one day after three very painful cervical ablation treatments. I just wanted to give up and instead I went online and found chiarisupport.org. I joined but didn’t have much hope. I honestly thought it would be a bunch of people complaining. I had become educated about Chiari and wasn’t a group person. I was sure I was just making a mistake & would hate the discussion forum and everything about it. Then I started to read what other Chiarians were posting and the support and information they all received. Each day I read more and even posted myself. I got to know the incredible patient Moderators and found I had a lot of knowledge to share with others. Then I was asked to become a Moderator and I found a purpose again. My physical situation hadn’t change and even got worse but it was still okay because I had support 24/7 from a “Family” that understood, truly, honestly understood. That is a gift I will never take for granted and is priceless. How could I not give to others what I was freely given at the worst time in my life. I will never be cured and my journey has been difficult but it molded me into the person I am today. I have told Ben and everyone that asks that Ben’s Friends save my life. Ben’s Friends is a lighthouse to those lost in a storm without any hope after being thrown in the Rare Disease abyss….patient, loved one, friend or caregiver. Ben’s Friends Forums has Patient Moderators and Members waiting and wanting to help anyone that asks and that lighthouse never burns out.

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