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.