Fabry Disease News

2025 Fabry Family Education Conference
2025-10-16 09:00 - 2025-10-17 17:00 (America/Chicago) | Embassy Suites by Hilton Greensboro Airport, 204 Centreport Dr, Greensboro, NC, 27409, United States
Each year since 2011 the National Fabry Disease Foundation has held its Fabry Family Education Conference in Greensboro, NC, and its Fabry Family Weekend Camp at nearby Victory Junction Camp in Randleman, NC. The conference is held on Thursday and Friday followed by the camp on Friday afternoon until noon on Sunday. All individuals with Fabry disease and their families are invited to the annual conference, not just families going to camp. Lodging and meals are provided at the conference.
The Thursday conference agenda consists of activities, exhibits, and a welcome dinner. On Thursday afternoon, we conduct activities that contribute to Fabry disease awareness, research, and outreach that benefit the entire Fabry community. The Friday conference agenda includes physicians and other healthcare speakers providing medical presentations as well as speakers providing industry updates and other helpful presentations. We have an adult chat session to get to know each other and to share family experiences.
While the adults are participating in the adult education sessions, the kids are in the capable hands of our contracted team of nannies and tutors participating in a variety of activities and entertainment. A highlight of the teen’s and kid’s activities is a block of two-hour chat sessions facilitated by a team of genetic counselors, nurses, and social workers holding age-appropriate discussions about living with Fabry disease. The groups are divided by age and by affected or non-affected status. The unaffected sibling chat sessions are equally as important as the chat sessions for affected children.
