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SUMMARY:2026 CRN Regional Family Meetup
DESCRIPTION:Family and friends within driving distance of Jacksonville\, Florida\, do not want to miss this event! \nOpen to those living with cystinosis and their loved ones\, the 2026 CRN Regional Family Meetup is an intimate gathering designed to connect\, inform and strengthen our cystinosis community. Hosted by Chelsea Meschke\, LMSW\, CRN VP of Family Support and proud mom of two cystinosis warriors\, this special event creates space for meaningful conversation and cystinosis learning. \nDuring this one day event\, we will celebrate Cystinosis Awareness Day together. We are honored to welcome guest speaker Dr. Larry Greenbaum\, MD\, PhD. Dr. Greenbaum is a prominent pediatric nephrologist and Division Director at Emory University/Children’s Health of Atlanta. He is the Principal Investigator for the Emory site of the Cohort 0 clinical trial for CYStem gene therapy. \nRegistration covers:\n– Admission for up to 4 people\n– Free hotel parking\n– Breakfast\, lunch\, snacks and beverages during the Sat\, May 2 event\n– Post-event mileage reimbursement from your home to the hotel (up to 150 miles roundtrip)\n– Complimentary hotel stay on Fri\, May 1st at the Hyatt Place Jacksonville/St. Johns Town Center (meetup begins Saturday morning). When you select the complimentary hotel stay\, CRN will handle your reservation. Rooms default to a standard king bed with a sleeper sofa. \nTo attend\, all (including children) need to be registered by April 7th\, 2026. \nFor questions\, email chelseam@cystinosis.org. See you in Jacksonville this May! \nRegistration is now closed. Thank you for your interest. Check our Awareness Day event for other ways to take part from home.
URL:https://cystinosis.org/event/2026-crn-regional-family-meetup/
LOCATION:Hyatt Place St Johns Town Center\, 4742 Town Center Parkway\, Jacksonville\, FL\, 32246\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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DTSTART;TZID=UTC:20210716T180000
DTEND;TZID=UTC:20210718T154500
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SUMMARY:2021 CRN Summer Online Conference
DESCRIPTION:Our biennial conference took place – virtually – July 16 – July 18\, 2021. \nWith the safety and health of our community in mind\, we shifted from an in-person event to a 100% online conference series. We are focused on providing an educational\, supportive\, engaging and fun experience. The beat goes on! \nThe conference is currently closed. However\, select sessions are available now on our YouTube channel and you can review the agenda here. \nOur original 2021 conference location of Nashville\, Tennessee will now host our face-to-face celebration in 2023. We hope to host more in person regional gatherings in 2022. Please be sure to check back on our website and social outlets for future announcements.
URL:https://cystinosis.org/event/announcement-2021-family-conference/
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ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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DTSTART;TZID=America/New_York:20200425T070000
DTEND;TZID=America/New_York:20200425T150000
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CREATED:20190910T193640Z
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UID:1685-1587798000-1587826800@cystinosis.org
SUMMARY:Virtual: Cystinosis Network Europe 2020 International Conference
DESCRIPTION:Following much consideration\, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference planned for Dublin in July 2020 due the ongoing situation with COVID-19. \nThe International Cystinosis Family Conference is now taking place online! \nOn April 25th from 7am to 3pm ET you will have access to this free event. Available in you own home anywhere in the world\, you can now watch cystinosis world experts (with translation) presenting the latest information on managing cystinosis; educational issues; bones and muscles; eyes and possible new treatments; kidneys – pre and post transplant and keeping well; the latest research in gene therapy and other new treatments; pregnancy and male fertility; the impact of COVID-19; and maintaining your mental health. \nConfirmed speakers include Prof Elena Levtchenko (Chair)\, Prof Atif Awan\, Dr Rachel Bishop\, Prof Don Cairns\, Dr Anuj Chauhan\, Dr Stephanie Cherqui\, Prof Paul Goodyer\, Prof Paul Grimm\, Dr Patrick Harrison\, Prof Craig Langman\, Dr Herbie Newell\, Dr Joyce Senior\, and more. \nRegister Now. To secure your place and notify the group of translation preferences. \nAbout CNE \nCystinosis Network Europe (CNE) which comprises members from patient organizations across Europe and further afield. Eight European organisations come together to support people with cystinosis and promote research and form a network. We have a number of projects ongoing to support people living with cystinosis and their families; an international conference every two years; and the development of a Community Advisory Board in Cystinosis\, with the support of EURORDIS.
URL:https://cystinosis.org/event/cystinosis-network-europe-2020-international-conference/
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ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis-europe.eu
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