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X-WR-CALNAME:Fabry Disease News
X-ORIGINAL-URL:https://fabrydiseasenews.com
X-WR-CALDESC:Events for Fabry Disease News
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DTSTART;TZID=America/Chicago:20241018T170000
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DTSTAMP:20260405T134058
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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DTSTART;TZID=America/Chicago:20241017T090000
DTEND;TZID=America/Chicago:20241018T163000
DTSTAMP:20260405T134058
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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