Well before virtual interactions became the norm, Ben Munoz, a former Baylor medical student turned entrepreneur, founded Ben’s Friends after surviving a rare brain condition in 2006. Now a nonprofit with 43 online communities, it supports over 79,000 rare disease patients, providing a space to discuss diagnoses, symptoms, and treatments. Run by volunteers, it prioritizes emotional support over fundraising. In 2020, it partnered with Antidote Technologies and MyRareData to connect members with clinical trials. With 7,000 rare diseases affecting millions, Ben’s Friends helps reduce isolation.
Coping through virtual connection: rare disease support communities
