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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:20260409T174757
CREATED:20250904T143805Z
LAST-MODIFIED:20260408T143419Z
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’s 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. \nIdeas 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)\nLocated near Jacksonville\, FL? Attend the in-person meetup on May 2 to celebrate the day with others\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. \nThe Awareness Day 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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