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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:20250101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20261208T190000
DTEND;TZID=UTC:20261208T200000
DTSTAMP:20261005T182027Z
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LAST-MODIFIED:20261005T182027Z
UID:19590-1796756400-1796760000@cystinosis.org
SUMMARY:December Zoom Night- Navigating Rare During the Holidays
DESCRIPTION:Join us on Tuesday\, December 8th for a Cystinosis Zoom Night. This is a welcome space open to everyone impacted by cystinosis. Our primary topic is Navigating a Rare Disease During the Holidays. We’ll talk about travel\, planning when away from typical routines\, stress\, added social gatherings\, and anything that is on your mind.    \nReminder: This call is intended to be a space for people and families affected by cystinosis to connect\, share experiences\, and learn from one another. \nWe ask that while respecting those experiences we keep the conversation focused so we can make the most of our time together. Thank you for helping us keep this a supportive space for everyone. \n\nTuesday\, December 8\, 2026\n7:00pm Eastern\nHost: Chelsea Meschke\, VP of Family Support \nJoin the Zoom call by clicking/saving this link\n\nQuestions? Message Chelsea at chelseam@cystinosis.org. We look forward to seeing you then.
URL:https://cystinosis.org/event/december-zoom-night-navigating-rare-during-the-holidays/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20270722
DTEND;VALUE=DATE:20270725
DTSTAMP:20260505T234306Z
CREATED:20260429T155749Z
LAST-MODIFIED:20260505T234306Z
UID:9164-1816214400-1816473599@cystinosis.org
SUMMARY:2027 CRN Family Conference
DESCRIPTION:Join us in the heart of Uptown Charlotte.\nCRN Family Conferences draw some of the largest gatherings of cystinosis families in the world. The weekend-long agenda creates a space for connection\, learning\, and shared experience for each member of the family. \nSave the dates!\nTo stay informed about registration\, scholarships\, and updates\, email info@cystinosis.org or send us a DM on social media with CLT2027 and your email address. \nMore details coming soon\, be sure to check back as the program takes shape.
URL:https://cystinosis.org/event/2027-crn-conf/
LOCATION:Charlotte Marriott City Center\, 100 West Trade Street\, Charlotte\, NC\, 28202\, United States
CATEGORIES:Gatherings/Conferences
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ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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