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X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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DTSTART:20190101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20200321T160000
DTEND;TZID=UTC:20200321T173000
DTSTAMP:20260406T081239
CREATED:20200317T212213Z
LAST-MODIFIED:20200319T190233Z
UID:2378-1584806400-1584811800@cystinosis.org
SUMMARY:Cystinosis Sessions: Coronavirus\, Medication
DESCRIPTION:Welcome to Cystinosis Sessions\, a series created by the Adult Leadership Advisory Board (ALAB). These video conferences aim to help adults living with cystinosis and hope to inform stakeholders beyond our patient community about life with this rare disease. \nYou are invited to ALAB’s very first video conference – Saturday\, March 21 at 4pm ET.\nTopic: Medication ***UPDATE*** Given the current Coronavirus/COVID-19 climate\, we are adding time to discuss questions and concerns with the ALAB team and Registered Nurse and mom of 2 with cystinosis: Anna Pruitt. \nBelow you will find a draft agenda and Zoom (video conference provider) log in instructions. Please download Zoom prior to the 4pm ET start time. We hope to see you then! \nDraft Agenda: \n\nCoronavirus/COVID-19\nProcysbi: Advantages & Disadvantages\nMedicine containers\nTravel tips/hospital visits with Procysbi\, Cystagon and/or eyedrops (Cystaran)\nMedication odor tips\nPersonal experiences (time permitting)\n\nDownloading Zoom/Video Conference Prep \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\nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786 \nOne tap mobile\n+16465588656\,\,2663523786# US (New York)\n+16699009128\,\,2663523786# US (San Jose) \nDial by your location\n+1 646 558 8656 US (New York)\n+1 669 900 9128 US (San Jose)\nMeeting ID: 266 352 3786\nFind your local number: https://zoom.us/u/a9v2YRNtU
URL:https://cystinosis.org/event/cystinosis-sessions-medication/
CATEGORIES:Gatherings/Conferences
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