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X-WR-CALNAME:Fabry Disease News
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X-WR-CALDESC:Events for Fabry Disease News
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DTSTART;TZID=America/Chicago:20251017T170000
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UID:10000004-1760720400-1760875200@fabrydiseasenews.com
SUMMARY:2025 Fabry Family Weekend Camp
DESCRIPTION:We go to a very special place each September/October when we hold our annual Fabry Family Weekend Camp. We bring everyone to Greensboro\, North Carolina on Wednesday or early Thursday for informal conference activities\, then a full day of educational presentations on Friday. At about 4:30 pm on Friday\, we transport approved families to nearby Victory Junction for our weekend camp. Our camp is awesome! \nCriteria to attend camp: If you have at least one child with Fabry disease that is 6 to 16 years old\, you are eligible to bring your entire immediate family to our expense-free annual Fabry Family Weekend Camp (Friday late afternoon to noon Sunday). All families attending camp are automatically signed up to attend our annual Fabry family education conference before camp (Thursday to Friday afternoon). \nThe NFDF administers a contract with Victory Junction for lodging\, meals\, snacks\, and loads of facilitated fun activities at camp. We provide transportation from the conference to Victory Junction and back to the airport on Sunday.\nWe need volunteers to support our camp. Family and friends\, clinic staff and industry staff are welcome and encouraged to apply. \nIt is a great experience! Please submit volunteer applications as soon as possible once we announce the start date in our periodic e-newsletter. \nIf you have questions\, please contact Jerry at jerry.walter@fabrydisease.org or 800-651-9131.
URL:https://fabrydiseasenews.com/event/2025-fabry-family-weekend-camp/
LOCATION:Victory Junction Camp\, 5467 Fred Lineberry Road\, Randleman\, NC\, 27317\, 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:20251016T090000
DTEND;TZID=America/Chicago:20251017T170000
DTSTAMP:20250127T170602Z
CREATED:20250124T172306Z
LAST-MODIFIED:20250127T170602Z
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. \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.
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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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241018T170000
DTEND;TZID=America/Chicago:20241020T110000
DTSTAMP:20240920T193605Z
CREATED:20240920T193605Z
LAST-MODIFIED:20240920T193605Z
UID:10000002-1729270800-1729422000@fabrydiseasenews.com
SUMMARY:Fabry Family Camp
DESCRIPTION:In 2024\, the National Fabry Disease Foundation will host the annual Fabry Family Camp on October 18-20. \nThe NFDF’s contracted annual camp at Victory Junction Camp\, located in Randleman\, NC\, provides a wonderful\, expense-free experience for families with Fabry disease. To learn about the camp’s facilities\, see https://victoryjunction.org/. \nFamilies with at least one child 6-16 years old with Fabry disease can attend camp. In our periodic e-newsletter\, we’ll send information about how to submit a family application to attend camp in June-July and about camp volunteer opportunities to the Fabry community. Please read our periodic e-newsletter and monitor our Facebook page (www.facebook.com/FabryDisease) for updates. \nThe GPS/Google Maps address is 5467 Fred Lineberry Road\, Randleman\, NC 27317. The camp is approximately a 30-minute drive from the Greensboro conference hotel. \nFor those who participate in the 14th annual Fabry Family Education Conference just before the camp\, an NFDF contracts a bus service to take participants from the conference hotel to the camp on Friday and back to the airport on Sunday\, except for those who drove to the conference\, will drive to camp\, then back home. \nPlease read our periodic e-newsletter and monitor our Facebook page to stay up-to-date.
URL:https://fabrydiseasenews.com/event/fabry-family-camp/
LOCATION:Victory Junction Camp\, 5467 Fred Lineberry Road\, Randleman\, NC\, 27317\, United States
CATEGORIES:Fabry Disease Foundation
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20241017T090000
DTEND;TZID=America/Chicago:20241018T163000
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. \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. \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.
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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