As a patient advocacy organization dedicated to a rare condition, our community, is spread accross the globe. As such, many of our gatherings, events and support groups are held virtually or in specific cities where a community member has a network of support.

Families from across the globe have organized blood drives, running, walking and biking events, golf, bowling, and washer tournaments, chili cook-offs and food tasting galas. These events have allowed families to promote community awareness, remember a lost loved one, meet other affected families, and contribute to meaningful programs and research initiatives.

Our community is strong, resilient, creative, and motivated to #endAFE. Check out our calendar of events and support offerings below. If you are interested in creating a fundraising or awareness event or need help getting started, we’d love to help! Contact us to set up a call.