Summary

BensFriends.org is an international, mission-driven non profit with a network of free, supportive online communities for people affected by rare diseases* and chronic illnesses, as well as their caregivers, family and friends.

Founded by Ben Munoz after a 2006 stroke at age 29, BensFriends.org manages a network of patient-to-patient communities helping tens of thousands of people worldwide through emotional support and connection.

Ben’s Friends is the only organization run by patients, for patients.

*There is no single definition of rare diseases that is accepted worldwide. The United States’ Orphan Drug Act, for instance, defines rare disease as a disease or condition that affects less than one in 200,000 people in the US. For the European Union, a disease is considered rare when it impacts less than 1 in 2,000 individuals.

There are about 7,000 known rare diseases and collectively, about 1 in 10 people (or 30 million people) in the U.S. have a rare disease. Everyone can be affected by a rare disease, directly or indirectly.

Statistics

50 Ben’s Friends Support Communities 80,000+ Ben’s Friends Community Members 17,000+ Ben’s Friends Unique Monthly Visitors 7,000+ Rare Diseases 400M+ Rare Disease Patients Around the World

Profile

Mission

To ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

Core Value

Positively impact our members’ lives everyday.

Model

BensFriends.org is fully supported by donors and corporate partners..  An army of volunteers help out, no one profits, and all donations go directly to funding the networks.

TIMELINE

2006 Ben Munoz suffers a serious stroke caused by a rare condition called an AVM. During recovery he’s alone & unable to find a support group of AVM stroke survivors.

2007 So Ben creates avmsurvivors.org to ensure others don’t suffer alone. Dozens of people join to find support and friends.

2008 Hundreds more join and express gratitude. Ben’s classmate and friend Scott Orn helps create the 2nd and 3rd communities and BensFriends.org is formed.

2009 AVMSurvivors.org has 1,000 members. Ben and Scott launch #4: www.aldsupport.org

2010-2011 New friends join the team to help Ben achieve his mission, launch new communities, raise $. Blog.bensfriends.org launched with amazing thank you’s, stories, and updates. BensFriends.org featured in or partnered with Seth Godin’s book Tales of the Revolution, NPR, Extole, Pay It Forward, Brown Alumni Mag, Disability Digest, and more. BensFriends.org reaches 25 communities & passes 14,000 members.

2012-2014 Partnered with Advocacy for Patients with Chronic Illness (free legal), Friends of Treasure (patient financial assistance), RareDiseaseDay.org (global awareness), 2nd.MD (2nd opinions), Rare Disease UK , Rare Genomics, Patient Power. Launched mobile app & e-book; featured in TechCrunch, Houston Chron, Harvard BR. Ben is featured in Forbes Magazine Receives “LinkedIn for Good and Nonprofit Innovation Grant”

2015-2017 Ben’s Friends was awarded with Yahoo Employee Foundation grant for Project Platform Ben’s Friends is fully migrated off of Ning and the communities are humming on Discourse Ben’s Friends launched seven more communities and reached more than 68,000 members and more than 300,000 page views.

2018-2021 Six more patient support communities were launched for people affected by – Raynaud’s Disease, Sarcoidosis, Chronic Pelvic Pain, Epidermolysis Bullosa, Dysautonomia, and Idiopathic Pulmonary Fibrosis. Ben’s Friends launched an online training facility Ben’s Friends U. The communities are revamped with a cleaner and simpler look. Ben is featured in Global Genes

2022 Ben’s Friends is featured in Baylor College of Medicine

Stories

Race car – AVMSurvivors.org member, Michael Hunt, painted his racecar with our logo!	Tattoos – We’ve had at least 2 members get tattoos with one of our logos!  How’s that for loving a brand and what we do!?	Fundraising – John Stamler, moderator of ASDSurvivors.org and LivingWithVWD.org, raised over $7,000 for BensFriends.org while running the NYC marathon 6 months after open heart surgery.

We look forward to working with you and helping people get support for their rare diseases!

Testimonials

Executive Team

Ben Munoz, President & Co-Founder (ben@bensfriends.org)

Ben created our first patient community, AVMSurvivors.org, so that he could find someone to connect with while recovering from an AVM-related stroke. Ben and his friend Scott Orn realized what an impact a compassionate community could make in patients’ lives and began creating more patient communities for people with other rare or chronic conditions. Ben was formerly a software developer at eToys and IVT. Ben is a graduate of Stanford University and Kellogg School of Management and was formerly a student of Baylor Medical School. He is also an e-commerce entrepreneur and lives in sunny Austin, TX.

Tom James Lambdin, Co-Executive Director (tj1@bensfriends.org)

Tom James, after a wide and varied career connected to research, medicine and business, looks after the technical and business side of Ben’s Friends. With his background in many aspects of medicine, and his long list of friends and contacts, he is also the Ben’s Friends medical fact checker. He has also long been an active member and moderator of one of Ben’s Friends community. Tom, a rare disease patient himself, lives in the western USA and if he ever had any spare time, he’d be fly fishing.

Clasina Field, Co-Executive Director (clasina@bensfriends.org)

Clasina is a retired Canadian teacher and school counselor who lives near Ottawa, ON. She puts her teaching and counseling skills to good use in managing the Member Experience side of Ben’s Friends. She guides community moderators,  deals with members who are having difficulties on the sites, and takes responsibility for the overall experience of Ben’s Friends members. Even prior to becoming a co-ED, Clasina has long been a member, and then also a moderator, of Ben’s Friends. Having a rare disease herself, when she’s not working on Ben’s Friends, Clasina enjoys being home, but she also loves going away and indulging in international travel.