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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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BEGIN:VEVENT
DTSTART;TZID=UTC:20200321T160000
DTEND;TZID=UTC:20200321T173000
DTSTAMP:20260516T155121
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
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200801T120000
DTEND;TZID=UTC:20200801T133000
DTSTAMP:20260516T155121
CREATED:20200729T053416Z
LAST-MODIFIED:20200729T053416Z
UID:2490-1596283200-1596288600@cystinosis.org
SUMMARY:Cystinosis Sessions: Exercise
DESCRIPTION:The Cystinosis Sessions live video series continues on Saturday\, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership Advisory Board (ALAB) will lead the discussion open to all community members. \nCystinosis Sessions: Exercise \n\nImportance of exercise\nTypes of exercise\n\nStrength training\nAerobics\nStretching\nBalance training\nModerate vs Intense exercise\n\n\nAnd more\n\nPlease download the Zoom app prior to the meeting. \nJoin Zoom Meeting\nhttps://zoom.us/j/2663523786\nMeeting ID: 266 352 3786\nClick on the above and have the Meeting ID ready\, if you use the link provided\, the meeting ID is not needed.
URL:https://cystinosis.org/event/cystinosis-sessions-exercise/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201107T160000
DTEND;TZID=America/New_York:20201107T170000
DTSTAMP:20260516T155121
CREATED:20201101T230444Z
LAST-MODIFIED:20201101T230600Z
UID:2800-1604764800-1604768400@cystinosis.org
SUMMARY:Cystinosis Sessions: Diet & Nutrition
DESCRIPTION:Join the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday\, November 7th at 4:00 pm ET. The session will focus on \n\nDiet\nNutrition\nRegional food favorites\n\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-diet-nutrition/
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:20210306T160000
DTEND;TZID=UTC:20210306T170000
DTSTAMP:20260516T155121
CREATED:20210223T234904Z
LAST-MODIFIED:20210223T234904Z
UID:3018-1615046400-1615050000@cystinosis.org
SUMMARY:Cystinosis Sessions: March Video Call
DESCRIPTION:All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday\, March 6th. \nThis “Cystinosis Session” will focus on the topic of relationships. \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. We hope to see you then!
URL:https://cystinosis.org/event/cystinosis-sessions-march-video-call/
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:20210410T120000
DTEND;TZID=UTC:20210410T130000
DTSTAMP:20260516T155121
CREATED:20210410T051947Z
LAST-MODIFIED:20210410T051947Z
UID:3158-1618056000-1618059600@cystinosis.org
SUMMARY:Cystinosis Sessions: April Video Call
DESCRIPTION:Cystinosis Sessions: April Video Call \nAll are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday\, April 10th. \nThis “Cystinosis Session” will cover but will not be limited to well being\, employment and relationships. \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-april-video-call/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210501T160000
DTEND;TZID=UTC:20210501T170000
DTSTAMP:20260516T155121
CREATED:20210429T031943Z
LAST-MODIFIED:20210514T161523Z
UID:3175-1619884800-1619888400@cystinosis.org
SUMMARY:Cystinosis Session: May Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. \nThe Cystinosis Session is open to all who would like to engage in and/or listen to conversation around the following topics: \n\nCaregivers. What happens when they pass?\nWills\nEmployment\nand More\n\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. \n  \n  \n 
URL:https://cystinosis.org/event/cystinosis-session-may-video-call/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210605T160000
DTEND;TZID=UTC:20210605T170000
DTSTAMP:20260516T155121
CREATED:20210604T204721Z
LAST-MODIFIED:20210604T204721Z
UID:3268-1622908800-1622912400@cystinosis.org
SUMMARY:Cystinosis Sessions: June Video Call
DESCRIPTION:The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. \nThe conversation is open to the entire cystinosis community. This month’s topic is stress. Let’s discuss what we do for relief and ideas that may help in the future. \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. \n  \n  \n 
URL:https://cystinosis.org/event/cystinosis-sessions-june-video-call/
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:20210710T160000
DTEND;TZID=UTC:20210710T170000
DTSTAMP:20260516T155121
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/
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:20260516T155121
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/
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:20220108T160000
DTEND;TZID=UTC:20220108T170000
DTSTAMP:20260516T155121
CREATED:20220106T164011Z
LAST-MODIFIED:20220106T164011Z
UID:3533-1641657600-1641661200@cystinosis.org
SUMMARY:Cystinosis Sessions: January Video Call
DESCRIPTION:Saturday\, January 8th at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community. \nPlease note: this is not just for adults living with cystinosis\, everyone interested is invited to attend. \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-january-video-call-2/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
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