Fabry Family Education Conference

Don't miss our annual Fabry Family Education Conference every year in September/October.

See the Community Announcements section on the left of the home page for annual conference details.

The National Fabry Disease Foundation holds one large annual Fabry family conference each year, educational webinars, and sometimes several smaller Fabry family regional meetings around the country. The number of regional meetings and their locations and educational webinars varies from year to year. The pandemic caused us to postpone regional meetings, and we held a virtual annual conference in 2020 and 2021. 

To date, our annual conference is the largest gathering of individuals with Fabry disease anywhere in the world to our knowledge.  Not only do the conference and meetings provide opportunities to learn more about Fabry disease, but they also provide wonderful opportunities to meet other families to learn from each other, and to develop mutual support relationships. The annual conference and regional meetings are announced in our periodic newsletter, on our Facebook page, and in the Community Announcements section of the website homepage.

Please subscribe to our newsletter in the upper right section of the homepage so you don't miss an opportunity to attend the annual conference or other face-to-face and webinar meetings. 

Each year since 2011 the National Fabry Disease Foundation has held its Fabry Family Education Conference in Greensboro, North Carolina, and its Fabry Family Camp in nearby Victory Junction Camp in Randleman, North Carolina. 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 afterward. Lodging and meals are provided at the conference.

The Thursday conference agenda consists of activities, exhibits, and a welcome dinner. Thursday afternoon, we usually make awareness videos with the help of conference attendees. We conduct several activities that contribute to Fabry disease research and outreach that benefit the entire Fabry community. The Friday conference agenda includes several 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.