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.
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 […]
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 […]
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 […]
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 […]
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 […]
The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered virtually in 2021, offers opportunities for a global audience of physician-scientists, clinicians, and educators to share research, explore new ideas, build career opportunities, and collaborate on future projects. Presentations cover issues of interest to generalists as […]