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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:20200606T120000
DTEND;TZID=UTC:20200606T133000
DTSTAMP:20260404T071610
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
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20200815
DTEND;VALUE=DATE:20200816
DTSTAMP:20260404T071610
CREATED:20200806T065341Z
LAST-MODIFIED:20200814T184450Z
UID:2496-1597449600-1597535999@cystinosis.org
SUMMARY:Podcast: Youth to Adult Transition (part 1)
DESCRIPTION:Youth to Adult Transition Part 1- Discussion with Medical Professionals \nThe third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children’s Hospital and Stanford University of Medicine and Dori Rivera\, PAM (Patient Access Manager) from Horizon Therapeutics. \nHosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy\, Sara Healy\, Steve Schleuder\, Cheryl Simoens. \nBeginning August 15\,2020 at 9am ET\, this link will go live and connect you to the podcast via YouTube: https://youtu.be/zEMdQmxR0UU. \nThank you for your interest.
URL:https://cystinosis.org/event/podcast-youth-to-adult-transition-part-1/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20200822
DTEND;VALUE=DATE:20200823
DTSTAMP:20260404T071610
CREATED:20200806T065610Z
LAST-MODIFIED:20200807T034601Z
UID:2499-1598054400-1598140799@cystinosis.org
SUMMARY:Podcast: Youth to Adult Transition (part 2)
DESCRIPTION:Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis \nPart two of the youth to adult transition discussion is focused on personal experiences of adults living with cystinosis. Joining our panel on behalf of the adult community are Serena Scott (via mum Sue Scott)\, Kevin McCalla\, Ashley Abedini\, and Joe Rumney. \nHosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy\, Sara Healy\, Steve Schleuder\, Cheryl Simoens. \nPlease check back. Link to podcast coming soon.
URL:https://cystinosis.org/event/podcast-youth-to-adult-transition-part-2/
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20210807T160000
DTEND;TZID=UTC:20210807T170000
DTSTAMP:20260404T071610
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
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BEGIN:VEVENT
DTSTART;TZID=UTC:20210911T160000
DTEND;TZID=UTC:20210911T170000
DTSTAMP:20260404T071610
CREATED:20210910T143200Z
LAST-MODIFIED:20210910T144633Z
UID:3379-1631376000-1631379600@cystinosis.org
SUMMARY:Cystinosis Sessions: September Video Call
DESCRIPTION:Saturday\, September 11th at 4:00pm ET\, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. \nTOPICS  \nThe month’s central topic is COVID-19 and vaccines. This is a fluid discussion and will include the latest CDC announcements\, mental and physical well-being\, side effects encountered after receiving COVID-19 vaccines\, the booster shot available for immunocompromised individuals\, personal experiences\, and more. \nALL are invited to attend. Please note: this is not just for adults living with cystinosis. \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-september-video-call/
CATEGORIES:Gatherings/Conferences
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/03/Logo_Header.png
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