Cystinosis Sessions: Coronavirus, Medication
Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm ET.
10 events found.
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National Kidney Foundation (NKF) Spring Clinical Meeting
LA, United States*Update* March 10, 2020 Over the weekend, the Centers for Disease Control and Prevention (CDC) updated its recommendations for older adults and people with kidney disease or other severe chronic medical conditions. They note that these groups appear to be at higher risk for experiencing more serious COVID-19 illness. Out of an abundance of caution […]
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Virtual: Cystinosis Network Europe 2020 International Conference
Following much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference planned for Dublin in July 2020 due the ongoing situation with COVID-19. The International Cystinosis Family Conference is now taking place online! On April 25th from 7am to 3pm ET you will have access to this […]
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57 Miles for Cystinosis
DE, United States -
Live Video Conference: Dependence, Education & Employment
Join the LIVE video conference session on May 2nd!
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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 support education, awareness, research, and fundraising for our rare disease. Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis […]
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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 […]
