Welcome to our podcast series - Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory Board (ALAB), this series will focus on issues specific to our rare disease. The initial podcast episode launches on Rare Disease Day - February 29, 2020. This episode focuses on positive aspects and inspiring stories of […]
Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm ET.
*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 […]
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 […]
Join the LIVE video conference session on May 2nd!
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 […]
Tune into the ALAB's Podcast series as we discuss how to cope with loss and grief.
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 […]
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, […]