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Cystinosis Sessions: April Video Call

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 […]

Cystinosis Session: May Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. The Cystinosis Session is open to all who would like to engage in and/or listen to conversation around the following topics: Caregivers. What happens when they pass? Wills Employment and More Join Zoom Meeting https://zoom.us/j/2663523786 Meeting ID: […]

Cystinosis Sessions: June Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. The conversation is open to the entire cystinosis community. This month's topic is stress. Let's discuss what we do for relief and ideas that may help in the future. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 […]

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. […]

Cystinosis Sessions: August Video Call

The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom. TOPICS ALAB members will lead a discussion about 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 […]

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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 […]

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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 […]

Cystinosis Sessions: January Video Call

Saturday, January 8th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community. Please note: this is not just for adults living with cystinosis, everyone interested is invited to attend. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are […]

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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 […]

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 […]