The Adult Leadership Advisory Board (ALAB) is a group comprised of adults living with cystinosis. This program develops programming and opportunities for adults affected by cystinosis. In order to set the program up for success, the CRN has provided leadership training through a third party consultant.
ALAB’s focus is on the issues and challenges facing our community. They work with CRN board members and other organizations to address the issues, and provide mentorship.
Our goal is to create a group that will not only benefit from the experience, but will contribute to both the ALAB program and the entire cystinosis community.
Current initiatives include:
- CystinosisTEENS. A private Instagram account created to support teens living with cystinosis
- Cystinosis Rare: A Journey Into the Unknown. A podcast series covering a range of topics such as mental health issues, youth to adult transition, and educational issues. Check out the first episode here.
- Cystinosis Sessions. Face-to-face (video) conversations with cystinosis stakeholders. The first session is live on March 21 at 4pm ET. Get more details.
You can reach out to ALAB individuals by hovering over the pictures below. It will reveal methods of contact. Please feel free to reach out to our members at any time.
'I try not to look at times of struggle or adversity as a negative...adversities in life are opportunities that can create fighters, instill resiliency, and breed an increased level of self-reflection.'