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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;VALUE=DATE:20250507
DTEND;VALUE=DATE:20250508
DTSTAMP:20250505T211333Z
CREATED:20250317T152951Z
LAST-MODIFIED:20250505T211333Z
UID:4958-1746576000-1746662399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2025
DESCRIPTION:Now in it’s eighth year\, Cystinosis Awareness Day was created to shine a spotlight on our rare disease. Spreading information about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. How will you celebrate May 7th? \nThere are many ways to show your support. \n\nBe Seen\, Flood It Green. Update your profile picture or simply save and share on your social channels the image provided here (or anything with a green theme) and #cystinosisaware. If you want to take it a step further\, share a fact about cystinosis or share something you wish others knew\n\nAsk Me Anything (AMA). AMA is a powerful way to raise awareness by connecting\, sharing\, and engaging by openly answering questions about a topic\, like cystinosis. Leading up to awareness day we will provide these Q+A opportunities. If you’d like to pose a question or volunteer to provide answers\, email info@cystinosis.org or comment on our socials\n\nDouble Your Donation Days. From May 1–15\, 2025\, every dollar you give to CRN will be matched—fueling twice the support for cystinosis research and programming. Make a tax-deductible contribution today\nVisit our How to Help page for more\n\n 
URL:https://cystinosis.org/event/8th-annual-cystinosis-awareness-day/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260623T190000
DTEND;TZID=UTC:20260623T200000
DTSTAMP:20260618T145010Z
CREATED:20260618T145010Z
LAST-MODIFIED:20260618T145010Z
UID:12690-1782241200-1782244800@cystinosis.org
SUMMARY:Family Zoom Night - June
DESCRIPTION:What’s on your mind? Let’s talk! \nJoin us on Tuesday\, June 23rd for a Cystinosis Zoom Night. This is a welcome space open to everyone impacted by cystinosis. We will share what is troubling us\, celebrate our wins\, ask questions\, and most importantly\, connect with others.  \n\nJune 23\, 2026\n7:00pm Eastern\nHost: Chelsea Meschke\, VP of Family Support \nJoin the Zoom call at https://tinyurl.com/m3emt2s7\n\nIf you have any questions\, email Chelsea at chelseam@cystinosis.org. We look forward to seeing you then.
URL:https://cystinosis.org/event/family-zoom-night-june/
CATEGORIES:Gatherings/Conferences
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