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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;VALUE=DATE:20260507
DTEND;VALUE=DATE:20260508
DTSTAMP:20260512T233237
CREATED:20250904T143805Z
LAST-MODIFIED:20260429T164433Z
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\, the day has grown into a global moment of recognition\, awareness\, and action. \nJoin us in answering…\nWhat’s your 57? \nWays  to participate: \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 from around the world to be featured in the awareness campaign. Amplify your voice here. \nShow your 57\nChange your social media profile image(s) to support Cystinosis Awareness Day. Download it here. \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 using our secure\, tax-deductible form. \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. \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). \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. \nWe look forward to see how you choose to honor our 2\,000+ warriors this Cystinosis Awareness Day. \nAssets ready to download \n\nCystinosis Awareness Day flyer\nSocial media profile image
URL:https://cystinosis.org/event/cystinosis-awareness-day-2026/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230507
DTEND;VALUE=DATE:20230508
DTSTAMP:20260512T233237
CREATED:20221014T141524Z
LAST-MODIFIED:20230504T191129Z
UID:4060-1683417600-1683503999@cystinosis.org
SUMMARY:Cystinosis Awareness Day
DESCRIPTION:On May 7\, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it’s sixth year\, CAD is a global effort to raise funds and educate the general population about this disease. This year’s campaign will include testimonials from cystinosis warriors\, caregivers/family members and international cystinosis organizations. In addition\, we will feature physicians and rare partner organizations who’ve teamed up to amplify our message. \nHow will you spread the word? Here are some ideas to get you started: \n\n“One Thing” Campaign. Share the one thing you wish everyone knew about cystinosis\nNominate yourself or a fellow cystinosis warrior for the Cystinosis Warrior Impact Program\nShare your cystinosis odyssey or pass along information from our website\nVolunteer for cystinosis research studies\nStart a cystinosis fundraiser. Facebook and Instagram make this easy or contact Jonathan Dicks on how to host an event (jdicks@cystinosis.org)\nVisit our general list on How to Help\nTo donate\, click here\n\nIf you would like to volunteer to become and event ambassador\, please email info@cystinosis.org.
URL:https://cystinosis.org/event/cystinosis-awareness-day/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260512T233237
CREATED:20220128T232845Z
LAST-MODIFIED:20220228T051018Z
UID:3588-1646006400-1646092799@cystinosis.org
SUMMARY:Rare Disease Day 2022
DESCRIPTION:February 28th marks the 12th annual Rare Disease Day (RDD). \nObserved on the rarest day of the year\, the global event campaigns for equity for the over 7\,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic\, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the body. The cystine buildup causes tissue and organ failure\, leading to kidney failure\, muscle wasting\, swallowing difficulty\, diabetes\, photophobia\, and more. Our cystinosis community is known to have a population of 2\,000 worldwide with 600 residing in the U.S. \nIf you are ready to take action\, here are a few ways we can work together make a better world for those living with a rare disease. Thank you for visiting! \n– Virtual events: \n\nRare Disease Day: A Global Priority for Equity (Eurordis) and Demystifying the methodology to determine market value when remunerating the patient community for interactions with the pharmaceutical industry.\nRare Disease Week on Capitol Hill via the EveryLife Foundation.\nRare Disease Day with the NIH (National Institutes of Health).\nRare Disease Day with NORD.\nQuinnipiac RDD Symposium featuring CRN President Jonathan Dicks. Register here for the in-person or virtual option to where patients\, family members\, and researchers will discuss their stories and promote education\, awareness\, and advocacy. It is also an accredited continuing medical education (CME) activity for physicians.\nRare Disease Day Patient Panel with Wego Health. Join rare disease patient leaders to discuss resiliency\, self care\, story sharing\, and raising awareness to support the rare community.\nRare Disease Day Webinar on Feb 24 with the Canadian Organization for Rare Disorders. Bringing Canada’s Rare Disease Drug Strategy from Vision to Reality.\nThe Rare Disease Diversity Coalition and Black Women’s Health initiative is Feb 28 at 12pm ET. Discuss issues facing Black\, Indigenous and People-of-Color (BIPOC) living with a rare disease https://bit.ly/3HDWVyF. \n\n– The AllStripes cystinosis research program is here and we are proud to be a partner. We are looking for families impacted by cystinosis who want to advance cystinosis research from home. You can learn more here: allstripes.com/cystinosis. \n– Share information about rare disease within your networks and social media. For example: Join the Global Genes challenge by posting a photo/video wearing denim with #ShowYourGenes. \n– Light Up for Rare through rarediseaseday.org. \n– School Toolkit. The kit may help you have discussions with teachers or young children about rare disease. \n– Equity Toolkit. Rarediseaseday.org has featured tools to assist people living with a rare disease improve social opportunity\, non-discrimination in education and work\, and equitable access to health\, social care\, diagnosis and treatment. \n– Donate. You can contribute towards the research\, education and support efforts of the CRN by clicking here. \n– View the video message from the Adult Leadership Advisory Board; start watching here.
URL:https://cystinosis.org/event/rare-disease-day-2022/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/01/RDD_Support-Pledge-Strapline-1920x1080_ENGLISH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200507
DTEND;VALUE=DATE:20200508
DTSTAMP:20260512T233237
CREATED:20191130T062559Z
LAST-MODIFIED:20200504T182950Z
UID:2313-1588809600-1588895999@cystinosis.org
SUMMARY:Cystinosis Awareness Day - 3rd Annual
DESCRIPTION:Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation\, the 57-kb deletion. This marks the third year we’ve come together on this day to support education\, awareness\, research\, and fundraising for our rare disease. \nMonths of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis or Miles for Moose require training\, sponsors\, team coordination\, and consume a massive amount of time and dedication. With the latest COVID-19 restrictions\, this year’s events have been canceled\, postponed or re-imagined. We thank the entire community for your unwavering support – now more than ever. \nIt’s like our CRN President says\, “Cystinosis doesn’t stop. Until there is a cure\, neither will we.” \nCystinosis does not ease up during a worldwide pandemic; it does not understand quarantine. Not for one single day\, not for one hour\, not for one second do bodies living with cystinosis get a break. And we thank you for enduring this ongoing battle with us. \nHere are a few ways to help us in this fight: \n\nLike & share our awareness video\nUpdate your Facebook profile frame\nShare your cystinosis experience with a friend\, neighbor\, or colleague (in compliance with your local COVID-19 guidelines)\nRead inspiring cystinosis stories\nDonate\nStart a fundraiser by emailing info@cystinosis.org\n\nIf you’d like to learn more about cystinosis resources and research\, click here. We are proud to be one of the only organizations to provide comprehensive support\, education\, awareness\, and research relevant to each point in the cystinosis journey. \nThank you!
URL:https://cystinosis.org/event/cystinosis-awareness-day-3rd-annual/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200502
DTEND;VALUE=DATE:20200503
DTSTAMP:20260512T233237
CREATED:20200221T065804Z
LAST-MODIFIED:20200414T221034Z
UID:2368-1588377600-1588463999@cystinosis.org
SUMMARY:57 Miles for Cystinosis
DESCRIPTION:
URL:https://cystinosis.org/event/57-miles-for-cystinosis-2020/
LOCATION:DE\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header-1.png
ORGANIZER;CN="Clinton Moore":MAILTO:Clintonmoore1@aol.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190504T120000
DTEND;TZID=UTC:20190505T120000
DTSTAMP:20260512T233237
CREATED:20190417T185926Z
LAST-MODIFIED:20190503T184057Z
UID:1532-1556971200-1557057600@cystinosis.org
SUMMARY:2nd Annual 57 Miles for Cystinosis
DESCRIPTION:
URL:https://cystinosis.org/event/57-miles/
LOCATION:Sussex Central High School\, 26026 Patriots Way\, Georgetown\, DE\, 19947\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/04/57miles_Website.png
ORGANIZER;CN="Clinton Moore":MAILTO:Clintonmoore1@aol.com
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