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X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20250101T000000
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DTSTART;TZID=UTC:20260502T083000
DTEND;TZID=UTC:20260502T170000
DTSTAMP:20260403T193644
CREATED:20260219T190847Z
LAST-MODIFIED:20260325T013306Z
UID:5138-1777710600-1777741200@cystinosis.org
SUMMARY:2026 CRN Regional Family Meetup
DESCRIPTION:Family and friends within driving distance of Jacksonville\, Florida\, do not want to miss this event! \nOpen to those living with cystinosis and their loved ones\, the 2026 CRN Regional Family Meetup is an intimate gathering designed to connect\, inform and strengthen our cystinosis community. Hosted by Chelsea Meschke\, LMSW\, CRN VP of Family Support and proud mom of two cystinosis warriors\, this special event creates space for meaningful conversation and cystinosis learning. \nDuring this one day event\, we are honored to welcome guest speaker Dr. Larry Greenbaum\, MD\, PhD. Dr. Greenbaum is a prominent pediatric nephrologist and Division Director at Emory University/Children’s Health of Atlanta. He is the Principal Investigator for the Emory site of the Cohort 0 clinical trial for CYStem gene therapy. \nRegistration covers:\n– Admission for up to 4 people\n– Free hotel parking\n– Breakfast\, lunch\, snacks and beverages during the Sat\, May 2 event\n– Post-event mileage reimbursement from your home to the hotel (up to 150 miles roundtrip)\n– Complimentary hotel stay on Fri\, May 1st at the Hyatt Place Jacksonville/St. Johns Town Center (meetup begins Saturday morning). When you select the complimentary hotel stay\, CRN will handle your reservation. Rooms default to a standard king bed with a sleeper sofa. \nTo attend\, all (including children) need to be registered by April 7th\, 2026 and will be prioritized on a first come basis. Spots are limited. \nRegister here \nFor questions\, email chelseam@cystinosis.org. See you in Jacksonville this May!
URL:https://cystinosis.org/event/2026-crn-regional-family-meetup/
LOCATION:Hyatt Place St Johns Town Center\, 4742 Town Center Parkway\, Jacksonville\, FL\, 32246\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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