Coping through virtual connection: rare disease support communities
Well before interacting in virtual environments became the norm, Ben Munoz, a former Baylor College of Medicine student turned entrepreneur, was inspired by his experiences to form the online support group and not-for-profit organization Ben’s Friends.
Ben’s story
In 2006, Munoz suffered a rare kind of stroke caused by cerebral arteriovenous malformation. Although he survived the stroke, he had to undergo brain surgery and spent two years recovering. His feelings of loneliness and fear fueled him to start an online support group, which he hoped would help him connect with others in similar situations.
A friend of Ben’s suggested expanding his vision so the site could apply to other patients as well. Today, Ben’s Friends hosts 43 communities for rare diseases, including ataxia, Crohn’s disease, lupus and more. More than 79,000 individuals participate in communities on Ben’s Friends, and the numbers keep rising.
Dedicated volunteers moderate the communities, write press releases and help with other organizational aspects. Volunteers usually have rare conditions or have family members with conditions.
Why rare diseases?
In the United States, a rare disease is defined as a disease or condition that affects fewer than 200,000 people in the U.S. But rare does not always mean few. There may be as many as 7,000 rare diseases, bringing the estimated total number of Americans living with a rare disease to 25-30 million.
The communities within Ben’s Friends focus on support rather than raising awareness or fundraising. These groups aim to help members understand their diagnosis, symptoms and treatment options. The goal has always been to help people see themselves as part of a team rather than as alone in their battle. Countless lifelong friendships have been formed thanks to Ben’s Friends.
In the news and goals for the future
In 2020, Ben’s Friends partnered with Antidote Technologies and MyRareData to bring information about clinical trials, including virtual pre-screening, to the rare disease community. Through this partnership facilitated by MyRareData, Antidote is offering Ben’s Friends’ 79,000+ members the opportunity to receive information on clinical trials for their condition. When a patient receives a trial match, they will be able to determine whether the trial is right for them through an easy-to-understand online pre-screener. This collaboration aims to jumpstart research and make huge strides in bringing new drugs to market.
Check out Ben’s Friends to learn more about the organization and its communities.
