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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:20240101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20260502T083000
DTEND;TZID=UTC:20260502T170000
DTSTAMP:20260512T214334
CREATED:20260219T190847Z
LAST-MODIFIED:20260408T142942Z
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 will celebrate Cystinosis Awareness Day together. 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. \nFor questions\, email chelseam@cystinosis.org. See you in Jacksonville this May! \nRegistration is now closed. Thank you for your interest. Check our Awareness Day event for other ways to take part from home.
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;TZID=UTC:20260310T190000
DTEND;TZID=UTC:20260310T200000
DTSTAMP:20260512T214334
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260115T193000
DTEND;TZID=UTC:20260115T203000
DTSTAMP:20260512T214334
CREATED:20251008T161439Z
LAST-MODIFIED:20251230T194727Z
UID:5088-1768505400-1768509000@cystinosis.org
SUMMARY:Zoom Night - January
DESCRIPTION:Cystinosis Community Zoom Night\nThursday\, January 15 at 7:30 PM ET\nZoom link: https://us06web.zoom.us/j/88075560653 \nJoin our next Zoom night for an evening of connection and conversation. These calls are open to everyone living with and impacted by cystinosis\, however\, this call will focus on new/newer diagnosed families. It’s a welcoming space to share experiences\, ask questions\, and simply spend time together. \nHosted by Chelsea Meschke\, CRN Vice President of Family Support\, licensed social worker\, and mom to two cystinosis warriors. \nSee you there!
URL:https://cystinosis.org/event/zoom-night-january/
LOCATION:FL
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251118T193000
DTEND;TZID=UTC:20251118T203000
DTSTAMP:20260512T214334
CREATED:20251006T155754Z
LAST-MODIFIED:20251006T155754Z
UID:5086-1763494200-1763497800@cystinosis.org
SUMMARY:Zoom night - November
DESCRIPTION:Join our next Zoom night on Tuesday\, November 18th.  \nCalls are open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nNovember 18\n 7:30p ET\nZoom link: https://tinyurl.com/7s2datft \n\nOur host is Chelsea Meschke\, CRN VP of Family Support\, licensed social worker\, and mom to two cystinosis warriors.  \nWe hope to see you there!
URL:https://cystinosis.org/event/zoom-night-november/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250916T193000
DTEND;TZID=UTC:20250916T203000
DTSTAMP:20260512T214334
CREATED:20250908T163222Z
LAST-MODIFIED:20250908T163222Z
UID:5073-1758051000-1758054600@cystinosis.org
SUMMARY:Zoom Night - September
DESCRIPTION:We’re keeping it simple with no agenda\, no pressure. This call is open to everyone living with and impacted by cystinosis. It is a chance to connect\, ask questions\, and spend time together.  \n\nSeptember 16\n 7:30p ET\nZoom https://tinyurl.com/yy3v7euh\n\nOur host is Chelsea Meschke\, CRN VP of Family Support\, licensed social worker\, and mom to two cystinosis warriors.  \nWe hope to see you there!
URL:https://cystinosis.org/event/zoom-night-september/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250318T190000
DTEND;TZID=UTC:20250318T203000
DTSTAMP:20260512T214334
CREATED:20250305T203850Z
LAST-MODIFIED:20250305T204109Z
UID:4900-1742324400-1742329800@cystinosis.org
SUMMARY:Family Zoom Night - March
DESCRIPTION:Join us this March as Family Zoom Night returns! This welcoming space is open to anyone impacted by cystinosis to share experiences\, ask questions\, and connect with others. Led by our Vice President of Family Support\, Chelsea Meschke. \n\nMarch 18\, 2025\n7:00pm Eastern\nFor Zoom access\, visit https://tinyurl.com/t6zek7b2\n\nEmail Chelsea with any questions at chelseam@cystinosis.org.
URL:https://cystinosis.org/event/family-zoom-night-march/
LOCATION:https://cystinosis.org/event/family-zoom-night-march/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250211T183000
DTEND;TZID=UTC:20250211T193000
DTSTAMP:20260512T214334
CREATED:20250205T153509Z
LAST-MODIFIED:20250305T203155Z
UID:4863-1739298600-1739302200@cystinosis.org
SUMMARY:Family Zoom Night - February
DESCRIPTION:CRN Family Zoom Night \nAll are invited to attend a Family Zoom Night on February 11th. Our goal is to provide the cystinosis community with a safe place to share thoughts\, express our feelings\, and come together. Use this link to log into the meeting. We hope to see you there! Questions? Email Chelsea Meschke at chelseam@cystinosis.org.
URL:https://cystinosis.org/event/family-zoom-night/
LOCATION:https://cystinosis.org/event/family-zoom-night/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
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