Cystinosis Awareness Day – 3rd Annual
Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This marks the third year we've come together on this day to […]
5 events found.
video
Events
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Cystinosis & Mental Health: Virtual Meetup
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.
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Cystinosis Sessions: March Video Call
FeaturedAll 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 […]
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Cystinosis Sessions: April Video Call
FeaturedCystinosis 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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Cystinosis Sessions: September Video Call
FeaturedSaturday, 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 […]
