Cystinosis Sessions: Exercise
The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm - 1:30pm ET. The Adult Leadership Advisory Board (ALAB) will lead the discussion open to all community […]
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Adult Leadership Advisory Board
Podcast: Youth to Adult Transition (part 1)
Youth to Adult Transition Part 1- Discussion with Medical Professionals The third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children's Hospital and […]
Podcast: Youth to Adult Transition (part 2)
Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth to adult transition discussion is focused on personal experiences of adults living with cystinosis. Joining our panel on behalf of the adult community are Serena Scott (via mum Sue Scott), Kevin McCalla, Ashley Abedini, and Joe […]
Cystinosis Sessions: Alternative Therapies, Exercise & Activities
Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series - LIVE- on Saturday, October 3 at 12:00 pm ET. This open discussion will […]
Cystinosis Sessions: Diet & Nutrition
Join the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series - LIVE- on Saturday, November 7th at 4:00 pm ET. The session will focus on Diet Nutrition Regional food favorites 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 […]
Cystinosis Sessions:
Saturday, December 5th at 12:00 pm ET, the Adult Leadership Advisory Board (ALAB) will host a live video conference. This month's topics include the holidays, COVID-19 and eye drops. 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 call. […]
Cystinosis Sessions: January Video Call
All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session will touch on the battles and victories associated with cystinosis. Everyone is welcome. Topics include but are not limited to: Difficulties coping during COVID and school Tension between parents, siblings and children ALAB experiences with parental […]
Rare Disease Day 2021
The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. This year's Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud. This theme is our call to action. Let’s elevate our voices as a united rare disease community. […]
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Cystinosis Sessions: March Video Call
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 […]
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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 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 […]