Don't miss our annual Fabry Family Education Conference every year in September.
The National Fabry Disease Foundation holds one large annual Fabry family conference each year and several smaller Fabry family regional meetings around the country. The number of regional meetings and their locations varies from year to year. To date, our annual conference is the largest gathering of individuals with Fabry disease anywhere in the world. Not only do the conference and meetings provide opportunities to learn more about Fabry disease, they 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 face book page, and in the Upcoming Events section of the website homepage. Please subscribe to our newsletter in the upper right area of the homepage so you don't miss an opportunity to attend the conference or a regional meeting.
Each year beginning in 2011 the National Fabry Disease Foundation holds its Fabry Family Education Conference in Greensboro, North Carolina. It is held in Greensboro because of Greensboro's close proximity to 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 afterwards. Lodging and meals are provided at the conference. Air travel assistance is provided to those who need and request assistance as our annual budget permits.
The Thursday conference agenda consists of activities and exhibits and a welcome dinner. Thursday afternoon, we usually make our annual awareness video 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 physician and other healthcare speakers providing medical presentations as well speakers providing industry updates and other helpful presentations. We also 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 teens and kid's activities are a block of one to 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 affected or non-affected status. The sibling chat sessions are equally as important as the chat sessions for affected children.
In addition to the NFDF's annual conference and regional meetings, the Fabry Support & information Group (FSIG) holds their annual meeting in the February-March timeframe. Keep watch for FSIG's annual conference as well. Details are usually posted on FSIG's discussion page at www.fabry.org, in their periodic newsletter, and by individual flyers prior to the conference.