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  • May 2020

  • Sat 2
    May 2, 2020 @ 4:00 pm - 5:30 pm

    Live Video Conference: Dependence, Education & Employment

    Join the LIVE video conference session on May 2nd!

  • June 2020

  • Sat 6
    June 6, 2020 @ 12:00 pm - 1:30 pm

    Cystinosis Sessions: Overcoming Limitations & Goal Setting

    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: Facing challenges Peer pressure Limitations & how to overcome them Goal setting Downloading Zoom/Video Conference Prep Secure access to a mobile device (PC, Apple, Android), desktop […]

  • 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 […]

  • April 2022

  • Sat 9
    Featured April 9, 2022 @ 4:00 pm - 5:00 pm

    Cystinosis Sessions: April Video Call

    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.  We hope to see you there!  To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions […]

  • July 2022

  • Sat 9
    July 9, 2022 @ 4:00 pm - 5:00 pm

    Cystinosis Sessions: July Video Call

    Founding ALAB member, Brian Ensor shares his first-hand experiences with the AstraZeneca Vaccination Study. Join the Zoom call Saturday, July 9 at 4:00pm ET. Agenda items include the AZ study, open discussion and information on the ALAB’s call for new applicants.  Calls are held quarterly - we hope you are able to join us!  To […]

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