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DTSTART;TZID=America/Chicago:20251016T090000
DTEND;TZID=America/Chicago:20251017T170000
DTSTAMP:20250127T170602Z
CREATED:20250124T172306Z
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UID:10000003-1760605200-1760720400@fabrydiseasenews.com
SUMMARY:2025 Fabry Family Education Conference
DESCRIPTION: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. \n            \n                \n                \n            \n			\n\nThe 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. \nWhile 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. \n\n                    \n                    Print This Article
URL:https://fabrydiseasenews.com/event/2025-fabry-family-education-conference/
LOCATION:Embassy Suites by Hilton Greensboro Airport\, 204 Centreport Dr\, Greensboro\, NC\, 27409\, United States
CATEGORIES:Fabry Disease Foundation
ORGANIZER;CN="National Fabry Disease Foundation":MAILTO:jerry.walter@fabrydisease.org
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DTSTART;TZID=America/Chicago:20241017T090000
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DTSTAMP:20240919T192142Z
CREATED:20240919T192142Z
LAST-MODIFIED:20240919T192142Z
UID:10000001-1729155600-1729269000@fabrydiseasenews.com
SUMMARY:Fabry Family Conference
DESCRIPTION:On Wednesday\, many\, if not most\, individuals and families arrive at the conference hotel where selected activities will be conducted. \n            \n                \n                \n            \n			\n\nThe full conference begins with a conference exhibit hall on Thursday. Representatives from the pharmaceutical industry\, clinics\, and support organizations will be stationed at exhibit tables to provide information and answer questions. \nA Thursday evening buffet dinner will provided at 6:00 pm. \nOn Friday\, while adults are in the educational presentation sessions\, the children are in chaperoned activities rooms all day with contracted nannies and tutors. Fabry healthcare providers\, as well as representatives of the pharmaceutical industry and support organizations\, will provide educational presentations. \n            \n                \n                \n            \n			\n\nOn Wednesday and Thursday\, various focus groups\, survey opportunities\, and other activities will occur. Please read our periodic e-newsletter and monitor our Facebook page (www.facebook.com/FabryDisease) for updates. \nAfter the conference\, families participating in our follow-on Fabry Family Camp camp at Victory Junction will proceed to camp on NFDF-provided buses for attendees who did not drive their cars. Families driving will depart for camp just before the buses. \n\n                    \n                    Print This Article
URL:https://fabrydiseasenews.com/event/fabry-family-conference/
LOCATION:Embassy Suites by Hilton Greensboro Airport\, 204 Centreport Dr\, Greensboro\, NC\, 27409\, United States
CATEGORIES:Fabry Disease Foundation
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