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 […]
10 events found.
Events
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Podcast Discussion: Coping with Loss & Grief
Tune into the ALAB's Podcast series as we discuss how to cope with loss and grief.
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Cystinosis Sessions: Overcoming Limitations & Goal Setting
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 […]
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Cystinosis Sessions: Mental Health
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, […]
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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 members. Cystinosis Sessions: Exercise Importance of exercise Types of exercise Strength training Aerobics Stretching Balance training Moderate vs Intense exercise And more Please download the […]
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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 […]
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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 […]
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Cystinosis Sessions: Open Discussion
Join us for an open discussion on Saturday, September 5th!
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Caregivers Connect: Virtual Meetup
Caregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect with other caregivers. This is a free networking opportunity. Register at https://us02web.zoom.us/meeting/register/tZUpde2tqj8uH9yGl5nmGG6v1TvprXaLgtOV. FREE welcome kits - limited availability. We hope to see you there!
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Cystinosis Basics: Virtual Meetups
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!
