Ben Munoz, co-founder of Ben’s Friends, talks about his non-profit organization.



Ben’s Friends is a 501(c)(3) non-profit designed to provide a network for patients with rare diseases or chronic illnesses. Its goal is to be a safe and supportive place for patients to connect with other. It is a grassroots organization run by patients for patients. 

The seeds for this non-profit began in 2006, when Ben had a rare form of stroke called arteriovenous malformation (AVM). Soon thereafter, he created to find others like him and his experience with meeting and connecting with other patients led him to form, with his friends,, to create and operate safe, compassionate communities for people who need them (including patients and their families & friends).

Today, Ben’s Friends has over 40 communities providing support for patients and caregivers dealing with conditions from atrial septal defect to Von Willebrand’s disease.

To learn more about this community, visit

To stay up-to-date on the latest in rare diseases, including patient advocacy, sign up to newsletter at