Adult Leadership
Advisory Board

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The CRN is launching a new leadership committee.

The Adult Leadership Advisory Board (ALAB) is comprised of adults living with cystinosis. Ultimately, our program will develop programming and opportunity for adults affected by cystinosis. In order to set the program up for success, the CRN will begin by providing leadership training through a third party consultant.

ALAB will focus on the issues and challenges facing our community. They will work with CRN board members and other organizations to address the issues, as well as, mentor incoming members.

Our goal is to create a group that will not only benefit from the experience, but will contribute to both the Adult Leadership Advisory Board program and the entire cystinosis community. For questions, email

'A lot of us were told we would die at a very young age and we're not anymore. We are here and we are healthy, and we want to see future generations get even further.'

-Aimee, living with cystinosis

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