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X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART;VALUE=DATE:20190918
DTEND;VALUE=DATE:20190921
DTSTAMP:20260513T013543
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20191105
DTEND;VALUE=DATE:20191111
DTSTAMP:20260513T013543
CREATED:20190910T194605Z
LAST-MODIFIED:20190910T194605Z
UID:1688-1572912000-1573430399@cystinosis.org
SUMMARY:American Society of Nephrology – Kidney Week
DESCRIPTION:CRN will join the American Society for Nephrology (ASN) and more than 13\,000 other kidney professionals from across the globe at Kidney Week 2019 in Washington\, DC. The world’s premier nephrology meeting\, Kidney Week provides participants exciting and challenging opportunities to exchange knowledge\, learn the latest scientific and medical advances\, and listen to engaging and provocative discussions with leading experts in the field.
URL:https://cystinosis.org/event/american-society-of-nephrology-kidney-week/
LOCATION:Walter E. Washington Convention Center\, Washington\, DC\, USA\, 801 Mt Vernon Pl NW\, Washington\, 20001\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20200425T070000
DTEND;TZID=America/New_York:20200425T150000
DTSTAMP:20260513T013543
CREATED:20190910T193640Z
LAST-MODIFIED:20200408T044503Z
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/
LOCATION:TN
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/09/CNE.jpg
ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis-europe.eu
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210430
DTEND;VALUE=DATE:20210605
DTSTAMP:20260513T013543
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/
LOCATION:TN
CATEGORIES:Gatherings/Conferences
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210710T160000
DTEND;TZID=UTC:20210710T170000
DTSTAMP:20260513T013543
CREATED:20210709T131946Z
LAST-MODIFIED:20210709T131946Z
UID:3297-1625932800-1625936400@cystinosis.org
SUMMARY:Cystinosis Sessions: July Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. \nTOPICS  \nThe conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18\, 2021).  \nTo join\, click: https://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-july-video-call/
LOCATION:TN
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210807T160000
DTEND;TZID=UTC:20210807T170000
DTSTAMP:20260513T013543
CREATED:20210804T192959Z
LAST-MODIFIED:20210804T192959Z
UID:3339-1628352000-1628355600@cystinosis.org
SUMMARY:Cystinosis Sessions: August Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom. \nTOPICS \nALAB members will lead a discussion about the CRN Virtual Conference (held July 16-18\, 2021). \nTo join\, click: https://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-august-video-call/
LOCATION:TN
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20220707
DTEND;VALUE=DATE:20220711
DTSTAMP:20260513T013543
CREATED:20220113T163728Z
LAST-MODIFIED:20220802T183522Z
UID:3556-1657152000-1657497599@cystinosis.org
SUMMARY:CNE International Conference
DESCRIPTION:This summer\, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven\, Belgium. The conference will be segmented into a scientific meeting on July 7 with the family conference running July 8-10. \nAccess details here including: \n\nConference website\nRegistration page\nHotel and lodging info\nSession details click here\nQuestions? Email cystinose@ziggo.nl\n\nCall for abstracts! \n\n\n\nDuring the family conference\, a poster session for young researchers will be held\, which is intended to inform families and those living with cystinosis about their relevant research in the cystinosis field. Its primary aim is to fuel hope in people dealing with cystinosis by demonstrating the usefulness and impact of your research on patients’ everyday life\, and drawing the perspectives for a better future. Learn more here. \n\n\n\nCNE is an umbrella grouping of patient support\, advocacy and research organizations in Europe and beyond. \nPost-conference update  \nThe organization of the 3rd CNE International Cystinosis Conference would like to offer all interested parties the opportunity to view the video recordings in 8 languages and watch the presentations. \nYou can find everything about the conference at https://cystinosis.eu. \n 
URL:https://cystinosis.org/event/cne-international-conference/
LOCATION:MTC1 Maria-Theresiacollege\, Sint-Michielsstraat 6\, 3000 Leuven\, Belgium
CATEGORIES:Gatherings/Conferences
ORGANIZER;CN="Cystinosis Network Europe":MAILTO:denise.dunne@cystinosis-europe.eu
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230713
DTEND;VALUE=DATE:20230716
DTSTAMP:20260513T013543
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
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