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DTSTART;VALUE=DATE:20260703
DTEND;VALUE=DATE:20260705
DTSTAMP:20250904T141654Z
CREATED:20250904T141319Z
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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
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2025/09/CNE-2026-conference-announcement-1-year-out-.png
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260811T200000
DTEND;TZID=America/New_York:20260811T210000
DTSTAMP:20260809T155950Z
CREATED:20260809T155950Z
LAST-MODIFIED:20260809T155950Z
UID:15523-1786478400-1786482000@cystinosis.org
SUMMARY:August Zoom Call
DESCRIPTION:August cystinosis Zoom call discussions will be shaped by your questions and priorities.  \nChelsea Meschke\, VP of Family Support\, is our host on August 11 at 8p ET / 7p CT / 5p PT. Use this direct link to join the meeting: https://tinyurl.com/mw2437j2
URL:https://cystinosis.org/event/august-zoom-call/
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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DTSTART;TZID=UTC:20261006T200000
DTEND;TZID=UTC:20261006T210000
DTSTAMP:20260814T175721Z
CREATED:20260814T175721Z
LAST-MODIFIED:20260814T175721Z
UID:16003-1791316800-1791320400@cystinosis.org
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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DTSTART;TZID=UTC:20261113T073000
DTEND;TZID=UTC:20261113T180000
DTSTAMP:20260904T134552Z
CREATED:20260814T172623Z
LAST-MODIFIED:20260904T134552Z
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\nLessons from other lysosomal storage disorders\nEvolving standards of care and international guidelines\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.   \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\n  \nFor 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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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
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2026/04/CRNlogo_16_9.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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