The Adult Leadership Advisory Board (ALAB) is a group comprised of adults living with cystinosis. The group was formed under the Cystinosis Research Network (CRN) to support and develop programming and opportunities for adults affected by cystinosis. ALAB’s focus is on the issues and challenges facing the cystinosis community.
Member selection will be based on this application, a written reference from a source outside of family and friends, and a phone interview. 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.
Those selected as members must be able to commit to two to three phone/video meetings per month. Commitment is based on initiatives and subject to change.
If you have any questions, please email Jana_healy752@hotmail.com. To apply, please answer each of the following questions: