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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20250101T000000
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DTSTART;VALUE=DATE:20260507
DTEND;VALUE=DATE:20260508
DTSTAMP:20260421T170855
CREATED:20250904T143805Z
LAST-MODIFIED:20260421T170825Z
UID:5071-1778112000-1778198399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2026
DESCRIPTION:This year marks the 9th Annual Cystinosis Awareness Day. \nInspired by the 57kb deletion in the CTNS gene\, the most common cause of nephropathic cystinosis\, this day has grown into a global moment of recognition\, awareness\, and action. \nThis year we focus on one question: What’s your 57?\nHere is a sample of ways to take part: \n57 voices\nWhat’s your 57? The reason that keeps you going. The moment that shaped you. The “why” behind your connection to the cystinosis community. We’re inviting 57 people around the world to share theirs. Add your voice here. \nReflect\nJournal your journey. Write 57 words about your relationship with cystinosis\, or keep it simple and jot down how you are feeling today (share or keep it to yourself). \nGet creative\nTurn your “57” into a work of art; music\, drawing\, painting\, photography\, dance\, theater\, or crocheting\, writing etc. \nGive back\nAsk 57 friends and family members to donate to the CRN. \nExplain it\nCreate a short\, simplistic explanation of cystinosis to bring up in conversation. Or you could text\, email or call 5-7 people to talk about why awareness day is important to you. \nStay informed\nSpend 57 minutes reading the latest on cystinosis. Share one takeaway. \nActs of kindness\nComplete 5-7 small acts. Every action makes a difference! \nConnect\nLocated near Jacksonville\, Florida? Join us in-person on May 2 to celebrate the day with our cystinosis families. \nSimple actions can help others better understand this disease\, drive earlier diagnosis and better care\, generate stronger support\, all in hopes of improving longterm outcomes. How will you choose to honor this momentous occasion? Share with us at info@cystinosis.org or tag us on social media. \nHonor our 2\,000+ warriors in the most meaningful way to you this Cystinosis Awareness Day. \nThe donation campaign is now open. Use our secure\, tax-deductible form to contribute here.
URL:https://cystinosis.org/event/cystinosis-awareness-day-2026/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260703
DTEND;VALUE=DATE:20260705
DTSTAMP:20260421T170855
CREATED:20250904T141319Z
LAST-MODIFIED:20250904T141654Z
UID:5061-1783036800-1783209599@cystinosis.org
SUMMARY:2026 Cystinosis Network Europe International Conference
DESCRIPTION:Cystinosis Ireland hosts the Cystinosis Network Europe’s International Conference on July 3\, 2026. The Dublin event offers scientific and family sessions\, child care\, time for socialization and translation for seven different languages. For details\, go to https://www.cystinosis-europe.eu.
URL:https://cystinosis.org/event/cne-international-conference-2/
LOCATION:Royal Marine Hotel\, Dun Laoghaire\, Dublin\, Ireland
CATEGORIES:Gatherings/Conferences
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