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6 events found.

COVID-19

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  • March 2020

  • Sat 21
    March 21, 2020 @ 4:00 pm - 5:30 pm

    Cystinosis Sessions: Coronavirus, Medication

    Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm ET.

  • May 2020

  • Sat 2
    May 2, 2020

    57 Miles for Cystinosis

    DE, United States
  • January 2021

  • Sat 2
    January 2, 2021 @ 4:00 pm - 5:30 pm

    Cystinosis Sessions: January Video Call

    All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session will touch on the battles and victories associated with cystinosis. Everyone is welcome. Topics include but are not limited to: Difficulties coping during COVID and school Tension between parents, siblings and children ALAB experiences with parental […]

  • July 2021

  • Sat 10
    July 10, 2021 @ 4:00 pm - 5:00 pm

    Cystinosis Sessions: July Video Call

    The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS  The conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18, 2021).  To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. […]

  • September 2021

  • Sat 11
    Featured September 11, 2021 @ 4:00 pm - 5:00 pm

    Cystinosis Sessions: September Video Call

    Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS  The 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 […]

  • October 2021

  • Sat 2
    Featured October 2, 2021 @ 4:00 pm - 5:00 pm

    Cystinosis Sessions: October Video Call

    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. Please note: this is not just for adults living with cystinosis, everyone interested is […]

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