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X-WR-CALDESC:Events for Cystinosis Research Network
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20200502T160000
DTEND;TZID=America/New_York:20200502T173000
DTSTAMP:20260405T012152
CREATED:20200414T234814Z
LAST-MODIFIED:20200414T235101Z
UID:2399-1588435200-1588440600@cystinosis.org
SUMMARY:Live Video Conference: Dependence\, Education & Employment
DESCRIPTION:Join the Cystinosis Sessions video conference series hosted by the Adult Leadership Advisory Board (ALAB). Starting May 2nd at 4:00 pm ET\, the ALAB welcomes anyone impacted by cystinosis. This “session” will focus on: \n\nEducation\nEmployment\nImportance of Being Self-Reliant vs Being Dependent\nEssential Needs & Medication\nGeneral conversation as time allows\n\nTo join the meeting: \nhttps://zoom.us/j/2663523786 \nMeeting ID: 266 352 3786 \nDownloading Zoom/Video Conference Preparation \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.
URL:https://cystinosis.org/event/live-video-conference-dependence-education-employment/
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:20200606T120000
DTEND;TZID=UTC:20200606T133000
DTSTAMP:20260405T012152
CREATED:20200521T050942Z
LAST-MODIFIED:20200521T051344Z
UID:2430-1591444800-1591450200@cystinosis.org
SUMMARY:Cystinosis Sessions: Overcoming Limitations & Goal Setting
DESCRIPTION:The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults living with cystinosis) will host the event. Topics will include: \n\nFacing challenges\nPeer pressure\nLimitations & how to overcome them\nGoal setting\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 \nAdd the meeting to your calendar by clicking one of the buttons below. We look forward to “seeing” you and hearing you on June 6th!
URL:https://cystinosis.org/event/cystinosis-sessions-overcoming-limitations-goal-setting/
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:20260405T012152
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=UTC:20201003T120000
DTEND;TZID=UTC:20201003T133000
DTSTAMP:20260405T012152
CREATED:20201001T143243Z
LAST-MODIFIED:20201001T143243Z
UID:2601-1601726400-1601731800@cystinosis.org
SUMMARY:Cystinosis Sessions: Alternative Therapies\, Exercise & Activities
DESCRIPTION:Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday\, October 3 at 12:00 pm ET. This open discussion will include alternative therapies\, exercise and activities. \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-alternative-therapies-exercise-activities/
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:20201014T190000
DTEND;TZID=UTC:20201014T203000
DTSTAMP:20260405T012152
CREATED:20200917T162806Z
LAST-MODIFIED:20200917T162806Z
UID:2579-1602702000-1602707400@cystinosis.org
SUMMARY:Cystinosis Gene Therapy & Research Updates: Virtual Meetup
DESCRIPTION:Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University School of Medicine and Fernanda Copeland\, MS\, RD. Head\, Global Patient Advocacy & Engagement\, AVROBIO are our guest speakers. \n  \nRegister today to reserve your space at https://us02web.zoom.us/webinar/register/WN_PQZeGL2GT5W1MythBHbDzA. \nFREE welcome kits are here – availability is limited.
URL:https://cystinosis.org/event/cystinosis-gene-therapy-research-updates-virtual-meetup/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/09/research.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20201107T160000
DTEND;TZID=America/New_York:20201107T170000
DTSTAMP:20260405T012152
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:20210807T160000
DTEND;TZID=UTC:20210807T170000
DTSTAMP:20260405T012152
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:20211002T160000
DTEND;TZID=UTC:20211002T170000
DTSTAMP:20260405T012152
CREATED:20210930T154448Z
LAST-MODIFIED:20210930T181033Z
UID:3429-1633190400-1633194000@cystinosis.org
SUMMARY:Cystinosis Sessions: October Video Call
DESCRIPTION:Saturday\, October 2nd at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with others in the cystinosis community about current events\, travel and vacation tips\, staying safe curing COVID-19\, and whatever is on your mind. \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-october-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:20260405T012152
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220409T160000
DTEND;TZID=UTC:20220409T170000
DTSTAMP:20260405T012152
CREATED:20220310T200251Z
LAST-MODIFIED:20220322T145341Z
UID:3660-1649520000-1649523600@cystinosis.org
SUMMARY:Cystinosis Sessions: April Video Call
DESCRIPTION:Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our Adult Leadership Advisory Board Saturday\, April 9 at 4:00pm ET.  This event is open for all to attend.  \nWe hope to see you there!  \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-april-video-call-2/
CATEGORIES:Gatherings/Conferences
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