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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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DTSTART;VALUE=DATE:20260507
DTEND;VALUE=DATE:20260508
DTSTAMP:20260421T030949
CREATED:20250904T143805Z
LAST-MODIFIED:20260421T014551Z
UID:5071-1778112000-1778198399@cystinosis.org
SUMMARY:Cystinosis Awareness Day 2026
DESCRIPTION:Join the Cystinosis Awareness Day Movement!  \nMay 7th marks the 9th Annual Cystinosis Awareness Day (CAD). Inspired by the 57kb deletion in the CTNS gene (the most common genetic cause of nephropathic cystinosis) Cystinosis Awareness Day (CAD) has grown into a global day of recognition. \nThis year we ask – What’s your 57?  \nIdeas on how to take part: \n\n57 voices. We are gathering 57 people to answer one question: What’s Your 57? What motivates you personally or inspires you to support the cystinosis community? Bring this idea to life by adding your thoughts here [link coming soon]\nReflection. Reflect on your cystinosis journey thus far and write 57 words on how you are feeling today (share or keep it private)\nCystinosis explained. Create a short\, simplistic explanation of cystinosis to bring up in conversation -or- text\, email or call 5-7 people to talk about awareness day; tell them why it matters to you\nNews. Spend 57 minutes reading the latest on cystinosis and share one takeaway\nFundraising. Ask 57 friends and family to donate to the CRN\nRandom acts. Complete 5-7 acts of kindness\nGet creative. Utilize music\, drawing\, painting\, or crocheting\, etc. to turn your answer into a work of art\nIn-person meetup. Located near Jacksonville\, FL? Join us on May 2 to celebrate the day with other families\n\nSimple actions can help others better understand cystinosis\, 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. Honor 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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