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X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;TZID=UTC:20261113T073000
DTEND;TZID=UTC:20261113T180000
DTSTAMP:20260904T134552Z
CREATED:20260814T172623Z
LAST-MODIFIED:20260904T134552Z
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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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DTSTART;VALUE=DATE:20270722
DTEND;VALUE=DATE:20270725
DTSTAMP:20260505T234306Z
CREATED:20260429T155749Z
LAST-MODIFIED:20260505T234306Z
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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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