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Today
  • May 2020

  • Sat 2

    Live Video Conference: Dependence, Education & Employment

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

    Join the LIVE video conference session on May 2nd!

  • June 2020

  • Sat 6

    Cystinosis Sessions: Overcoming Limitations & Goal Setting

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

    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 […]

  • July 2020

  • Sat 11

    Cystinosis Sessions: Mental Health

    July 11, 2020 @ 4:00 pm - 5:30 pm

    The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression, and Coping. Our featured guest is Maya Doyle, MSW, PhD, LCSW. We look forward to seeing you at 4pm ET on July 11th. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Zoom Meetings Instructions Desktop, […]

  • September 2020

  • Tue 29

    Cystinosis Basics: Virtual Meetups

    September 29, 2020 @ 7:00 pm - 8:30 pm

    Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of Medicine is our expert speaker. Join us by registering today at https://us02web.zoom.us/webinar/register/WN_HU0G6SQuR4W_G8mmFr3bog. FREE welcome kits - limited availability. We hope you can join us!

  • October 2020

  • Tue 6

    Cystinosis & Mental Health: Virtual Meetup

    October 6, 2020 @ 7:00 pm - 8:30 pm

    Let's have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed psychologist, Dr. Cortney Taylor Zimmerman will guide the meetup. Register today at https://us02web.zoom.us/webinar/register/WN_Gw1Wxj3oQkCi00OpR2WFPQ. Welcome kits are here - with limited availability.

  • March 2021

  • Sat 6

    Cystinosis Sessions: March Video Call

    Featured March 6, 2021 @ 4:00 pm - 5:00 pm

    All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March 6th. This "Cystinosis Session" will focus on the topic of relationships. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the […]

  • April 2021

  • Sat 10

    Cystinosis Sessions: April Video Call

    Featured April 10, 2021 @ 12:00 pm - 1:00 pm

    Cystinosis Sessions: April Video Call All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, April 10th. This "Cystinosis Session" will cover but will not be limited to well being, employment and relationships. Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are instructions to help […]

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