The Worldwide Cystinosis Patient Community Advisory Boards (CABs) is supported by the EURORDIS EUROCAB Programme which assists patient organisations in setting up the CAB and offers guidance on common principles and tools for engagement, including capacity building. The CAB provides expert advice to those engaging in clinical research in the disease area, such as a pharmaceutical or biotechnology company, hospital or university research team. The CAB patient advocates offer their expertise by being involved before a clinical study starts and ensuring that clinical studies are designed to take into account their real needs, resulting in higher quality research. CAB members offer their expertise in how the clinical trial is run, how the patients will be able to best adhere to protocols, or how to ensure continued access to the medication after the study ends.

The Worldwide Cystinosis Patient Community Advisory Boards (CABs) members include people living with cystinosis, close family members or carers, and/or members of patient organisations. The Worldwide Cystinosis CAB has 12-15 members at any one time. Members work to an agreed terms of reference.