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Cystinosis Sessions: Coronavirus, Medication

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

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Welcome to Cystinosis Sessions, a series created by the Adult Leadership Advisory Board (ALAB). These video conferences aim to help adults living with cystinosis and hope to inform stakeholders beyond our patient community about life with this rare disease.

You are invited to ALAB’s very first video conference – Saturday, March 21 at 4pm ET.
Topic: Medication ***UPDATE*** Given the current Coronavirus/COVID-19 climate, we are adding time to discuss questions and concerns with the ALAB team and Registered Nurse and mom of 2 with cystinosis: Anna Pruitt.

Below you will find a draft agenda and Zoom (video conference provider) log in instructions. Please download Zoom prior to the 4pm ET start time. We hope to see you then!

Draft Agenda:

  1. Coronavirus/COVID-19
  2. Procysbi: Advantages & Disadvantages
  3. Medicine containers
  4. Travel tips/hospital visits with Procysbi, Cystagon and/or eyedrops (Cystaran)
  5. Medication odor tips
  6. Personal experiences (time permitting)

Downloading Zoom/Video Conference Prep

  • Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
  • Ensure reliable internet connection
  • Download Zoom Cloud Meetings here or through your device’s app store
  • Click on the link https://zoom.us/j/2663523786
  • Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Join Zoom Meeting
Meeting ID: 266 352 3786

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Meeting ID: 266 352 3786
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