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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;VALUE=DATE:20260507
DTEND;VALUE=DATE:20260508
DTSTAMP:20260406T224740
CREATED:20250904T143805Z
LAST-MODIFIED:20260406T171638Z
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. We encourage everyone to choose something meaningful to them. If comfortable\, share with neighbors\, friends\, loved ones\, healthcare professionals\, anyone who will listen. These simple actions can help others better understand cystinosis\, drive earlier diagnosis and better care\, generate stronger support\, all in hopes of improving longterm outcomes. \nHere are a few ideas on how to take part: \n\nReflect on your cystinosis journey and write 57 words on how you are feeling today (share or keep it private)\nCreate a 57 second explanation about cystinosis to bring up in conversation\nSpend 57 minutes reading the latest on cystinosis and share one takeaway\nAsk 57 friends and family to donate to the CRN\nComplete 5-7 acts of kindness\nUtilize music\, drawing\, painting\, or crocheting\, etc to turn your answer into a work of art\nText\, email or call 5-7 people to talk about awareness day; tell them why it matters to you\n\nHow will you choose to honor this momentous occasion? Share with us at info@cystinosis.org or tag us on social media. \nIt’s not too late to donate! Use our secure\, tax-deductible form 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:20260406T224740
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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