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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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TZID:UTC
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TZOFFSETFROM:+0000
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DTSTART:20180101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20190918
DTEND;VALUE=DATE:20190921
DTSTAMP:20260519T132440
CREATED:20190904T170703Z
LAST-MODIFIED:20190904T171910Z
UID:1676-1568764800-1569023999@cystinosis.org
SUMMARY:Global Genes: Rare Patient Advocacy Summit
DESCRIPTION:On behalf of the cystinosis community\, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops. \nGlobal Genes has more information on their website and FAQs page. “As the largest gathering of rare disease patients\, caregivers\, thought leaders and other rare disease stakeholders in the world\, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.” \n \nAbove: Clinton Moore (left) and Katie Morrison (right) at the 2018 Rare Patient Advocacy Summit. \n  \n  \n 
URL:https://cystinosis.org/event/global-genes-rare-patient-advocacy-summit/
LOCATION:Sheraton San Diego Hotel & Marina\, 1380 Harbor Island Drive\, San Diego\, CA\, 92101\, United States
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20201205T120000
DTEND;TZID=UTC:20201205T133000
DTSTAMP:20260519T132440
CREATED:20201208T032935Z
LAST-MODIFIED:20201208T032935Z
UID:2847-1607169600-1607175000@cystinosis.org
SUMMARY:Cystinosis Sessions:
DESCRIPTION:Saturday\, December 5th at 12:00 pm ET\, the Adult Leadership Advisory Board (ALAB) will host a live video conference. This month’s topics include the holidays\, COVID-19 and eye drops. \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nHere are instructions to help with downloading Zoom. We recommend completing these steps prior to the call. \n\nSecure access to a mobile device (PC\, Apple\, Android)\, desktop or laptop computer\nEnsure reliable internet connection\nDownload Zoom Cloud Meetings here or through your device’s app store\nClick on the link https://zoom.us/j/2663523786\nHave the Meeting ID ready: 266 352 3786. If you use the link provided\, the meeting ID is not needed.\n\nAdd the meeting to your calendar by clicking one of the buttons below.
URL:https://cystinosis.org/event/cystinosis-sessions/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210203T200000
DTEND;TZID=UTC:20210203T203000
DTSTAMP:20260519T132440
CREATED:20210112T212608Z
LAST-MODIFIED:20210209T180831Z
UID:2908-1612382400-1612384200@cystinosis.org
SUMMARY:Cystaran Town Hall: Product Shortage 2021 Expectations
DESCRIPTION:Leadiant Biosciences\, the distributor of CYSTARAN\, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is invited to attend the event where the following topics will be addressed: \n\nCystaran shortage updates\nNext steps and what to anticipate\nImportant contact information\nQuestions from the community\n\nRegistration is open here until the event begins\, however\, questions for the Leadiant panel must be submitted by January 25th. \nUpdate: The CYSTARAN Town Hall recording is now available.
URL:https://cystinosis.org/event/cystaran-town-hall-product-shortage-2021-expectations/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2021/01/cystaran_townhall.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210430
DTEND;VALUE=DATE:20210605
DTSTAMP:20260519T132440
CREATED:20210505T151136Z
LAST-MODIFIED:20210505T151247Z
UID:3181-1619740800-1622851199@cystinosis.org
SUMMARY:CRN at 2021 Virtual PAS
DESCRIPTION:The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering\, delivered virtually in 2021\, offers opportunities for a global audience of physician-scientists\, clinicians\, and educators to share research\, explore new ideas\, build career opportunities\, and collaborate on future projects. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas. Learn more here. \nThanks to our cystinosis advocate volunteers\, we are able to have a voice at this year’s virtual conference. Please visit our booth at https://www.pas-meeting.org
URL:https://cystinosis.org/event/crn-at-2021-virtual-pas/
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210716T180000
DTEND;TZID=UTC:20210718T154500
DTSTAMP:20260519T132440
CREATED:20200415T003642Z
LAST-MODIFIED:20210804T181608Z
UID:2402-1626458400-1626623100@cystinosis.org
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/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2020/04/TheBeatGoesOn_Virtual.jpg
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230713
DTEND;VALUE=DATE:20230716
DTSTAMP:20260519T132440
CREATED:20220810T155023Z
LAST-MODIFIED:20230227T222541Z
UID:3938-1689206400-1689465599@cystinosis.org
SUMMARY:2023 Family Conference - Nashville
DESCRIPTION:The CRN Family Conference is back…and in-person for the summer of 2023. Join us July 13 – July 15 in Nashville\, Tennessee. The event will take place at the Nashville Marriott at Vanderbilt University. \nFor agenda\, travel scholarships and more details\, click here. \nWe look forward to seeing you there!
URL:https://cystinosis.org/event/2023-family-conference-dates-location/
LOCATION:Nashville Marriott at Vanderbilt University\, 2555 West End Avenue\, Nashville\, TN\, 37203\, United States
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240826T180000
DTEND;TZID=UTC:20240826T190000
DTSTAMP:20260519T132440
CREATED:20240819T210516Z
LAST-MODIFIED:20240819T210516Z
UID:4788-1724695200-1724698800@cystinosis.org
SUMMARY:Adults August Meetup
DESCRIPTION:The Adult Leadership Advisory Board invites you to join their August meetup on Monday the 26th at 6p ET. This month’s topic: Mental Health – Trauma. \nSpecial guest is Kerry Heckman\, a licensed therapist from Seattle\, Washington. Register here to take part in the discussion.
URL:https://cystinosis.org/event/adults-august-meetup/
CATEGORIES:Gatherings/Conferences
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