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X-WR-CALNAME:Cystinosis Research Network
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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;TZID=UTC:20261006T200000
DTEND;TZID=UTC:20261006T210000
DTSTAMP:20260814T175721Z
CREATED:20260814T175721Z
LAST-MODIFIED:20260814T175721Z
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SUMMARY:October Zoom Night - Cystinosis and Aging
DESCRIPTION:Aging with cystinosis brings new questions\, challenges\, and experiences. Co-hosts Cheryl and Hannah (living with cystinosis) will dive into topics inspired by ongoing conversations happening now across the cystinosis community. Please add to your calendars and follow us here and on socials for updates.\n\n\n\nOct 6 @ 8p et / 7p ct / 5p pt\nSave/use this link to join
URL:https://cystinosis.org/event/october-zoom-night-cystinosis-and-aging/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
LOCATION:https://cystinosis.org/event/october-zoom-night-cystinosis-and-aging/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20261113T073000
DTEND;TZID=UTC:20261113T180000
DTSTAMP:20261006T013427Z
CREATED:20260814T172623Z
LAST-MODIFIED:20261006T013427Z
UID:15992-1794555000-1794592800@cystinosis.org
SUMMARY:2026 CRN Scientific Symposium
DESCRIPTION:Advancing the Future of Cystinosis Care. \nThe CRN Scientific Symposium brings together physicians\, clinicians\, researchers\, and scientists for a peer-to-peer exploration of emerging developments in cystinosis and lysosomal storage disorders. This one-day meeting will examine advances across the cystinosis research and clinical landscape; from newborn screening and novel approaches to treatment and drug delivery to emerging gene\, mRNA\, and cell-based therapies. Sessions will also explore advances across the broader lysosomal storage disorder landscape and their potential implications for the future of cystinosis research and therapeutic development. This event will foster exchange\, collaboration\, and discussion among colleagues working to advance the understanding and treatment of cystinosis. \nSymposium Chair\nWe are honored to announce the symposium will be Chaired by Elizabeth Ames\, MD\, PhD. She serves as Clinical Assistant Professor at the University of Michigan and is Co-Director at the Michigan NORD Rare Disease Center of Excellence.  \n \n  \nFeatured Topics\n\n\n\nNewborn screening in cystinosis\nNovel approaches to ocular drug delivery\nGene\, mRNA\, and cell-based therapies\nProdrug development\nTransition of care framework \nSwallowing dysfunction and myopathy\nLessons from other lysosomal storage disorders\n\n\n\n\n \n \n \n \n\nAgenda Preview\n\nAgenda and speakers are subject to change.\nRegistration\nYour registration includes admission to symposium sessions\, networking opportunities\, and breakfast/lunch/reception hour as outlined in the agenda. Closing date: October 30th.    \n\n \n \n\nRegistration – General\n \n\n \n \n \n \n\nRegistration – Industry\n\nLocation \n\nWeber’s Hotel 3050 Jackson Ave\, Ann Arbor\, MI 48103\nThis is a one-day event. For overnight accommodations\, hotel rooms are based on availability. Symposium speakers and board members will reserve rooms via Dana Marshall \n\nHelp Spread the Word \nKnow someone who should be in the room?Share the flyer with your colleagues and help us broaden the conversation. \n\n \n \n \n \n\nSymposium Flyer\n\nTravel Scholarships \nCRN Scientific Symposium Travel Scholarships support qualified healthcare professionals\, researchers\, and scientists with an interest in cystinosis or related lysosomal storage diseases for whom travel costs would otherwise be a barrier to attendance. Residents\, fellows\, postdocs\, graduate students\, etc. are also eligible. Recipients must commit to attending the full day of events in person. Travel scholarships are available to qualified attendees on a first-come\, first-served basis. Applications close October 23\, 2026\, or when available funding is exhausted. \nScholarship Application\n \nFor all event questions\, email info@cystinosis.org.  \n  
URL:https://cystinosis.org/event/2026symposium/
LOCATION:Weber’s Hotel Ann Arbor\, MI\, 3050 Jackson Avenue\, Ann Arbor\, MI\, 48103\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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DTSTART;TZID=UTC:20261208T190000
DTEND;TZID=UTC:20261208T200000
DTSTAMP:20261005T182027Z
CREATED:20261005T182027Z
LAST-MODIFIED:20261005T182027Z
UID:19590-1796756400-1796760000@cystinosis.org
SUMMARY:December Zoom Night- Navigating Rare During the Holidays
DESCRIPTION:Join us on Tuesday\, December 8th for a Cystinosis Zoom Night. This is a welcome space open to everyone impacted by cystinosis. Our primary topic is Navigating a Rare Disease During the Holidays. We’ll talk about travel\, planning when away from typical routines\, stress\, added social gatherings\, and anything that is on your mind.    \nReminder: This call is intended to be a space for people and families affected by cystinosis to connect\, share experiences\, and learn from one another. \nWe ask that while respecting those experiences we keep the conversation focused so we can make the most of our time together. Thank you for helping us keep this a supportive space for everyone. \n\nTuesday\, December 8\, 2026\n7:00pm Eastern\nHost: Chelsea Meschke\, VP of Family Support \nJoin the Zoom call by clicking/saving this link\n\nQuestions? Message Chelsea at chelseam@cystinosis.org. We look forward to seeing you then.
URL:https://cystinosis.org/event/december-zoom-night-navigating-rare-during-the-holidays/
LOCATION:Zoom
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20270722
DTEND;VALUE=DATE:20270725
DTSTAMP:20260505T234306Z
CREATED:20260429T155749Z
LAST-MODIFIED:20260505T234306Z
UID:9164-1816214400-1816473599@cystinosis.org
SUMMARY:2027 CRN Family Conference
DESCRIPTION:Join us in the heart of Uptown Charlotte.\nCRN Family Conferences draw some of the largest gatherings of cystinosis families in the world. The weekend-long agenda creates a space for connection\, learning\, and shared experience for each member of the family. \nSave the dates!\nTo stay informed about registration\, scholarships\, and updates\, email info@cystinosis.org or send us a DM on social media with CLT2027 and your email address. \nMore details coming soon\, be sure to check back as the program takes shape.
URL:https://cystinosis.org/event/2027-crn-conf/
LOCATION:Charlotte Marriott City Center\, 100 West Trade Street\, Charlotte\, NC\, 28202\, United States
CATEGORIES:Gatherings/Conferences
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ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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