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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;TZID=UTC:20260310T190000
DTEND;TZID=UTC:20260310T200000
DTSTAMP:20260403T210425
CREATED:20260116T171637Z
LAST-MODIFIED:20260116T172757Z
UID:5122-1773169200-1773172800@cystinosis.org
SUMMARY:Zoom Night - March
DESCRIPTION:Join us for our March Zoom call\, where we’ll be coming together to talk about kidney transplants. \nFor many in the cystinosis community\, the journey includes at least one (if not multiple) kidney transplants. This open\, supportive conversation will explore life before transplant\, dialysis\, re-transplantation\, and the realities in between. \nWith voices from across the community\, this call offers a chance to learn from one another\, ask questions\, and feel more prepared for what may lie ahead no matter where you are today. \n\nTuesday March 10\n7:00 pm et / 6:00 pm ct / 5:00 pm mt / 4:00 pm pt\nZoom meeting link: https://us06web.zoom.us/j/88412838095\n\nCRN VP of Family Support\, Chelsea Meschke will lead the event. Chelsea’s professional background is in social work and she is the caregiver of two young boys with cystinosis. \n 
URL:https://cystinosis.org/event/zoom-night-march/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2026/01/transplant3.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260502T083000
DTEND;TZID=UTC:20260502T170000
DTSTAMP:20260403T210425
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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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260507
DTEND;VALUE=DATE:20260508
DTSTAMP:20260403T210425
CREATED:20250904T143805Z
LAST-MODIFIED:20260306T141348Z
UID:5071-1778112000-1778198399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2026
DESCRIPTION:Join the Cystinosis Awareness Day Movement! \nHonor our 2\,000+ warriors in the most meaningful way to you. Let’s educate\, raise awareness and raise funds.   \nMay 7th marks the 9th Annual Cystinosis Awareness Day (CAD). It started as a reference to the 57kb deletion in the CTNS gene\, the most common genetic cause of nephropathic cystinosis. Since then\, CAD has turned into a global day of recognition. \nThis year we ask – What is your 57?  \nIt is a call to action that can be big or small; 57 reflective words about the disease or 57 friend and family contributions\, 57 minutes of walking to 57 acts of kindness. \nWe encourage everyone to choose something meaningful they can share and spread the word. Every single action makes a difference in the fight against cystinosis. \nHow will you choose to honor this momentous occasion? \n(To donate via our secure\, tax-deductible form\, click here)
URL:https://cystinosis.org/event/cystinosis-awareness-day-2026/
LOCATION:PA
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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