The Community Advisory Board (CAB) was created to establish a worldwide cystinosis committee under the mentorship of Eurordis, the representative body for rare diseases in Europe.
The key objective of CABs is to engage with pharmaceutical companies in order to bring the patient perspective to clinical trials and other areas.
Members of the CAB receive extensive education and training in all aspects of clinical trials/treatment development so that they become patient experts. The Cystinosis CAB has expanded its remit to engage at all stages of research development, including at the early research stage, and to provide advice and the patient perspective to ensure more effective clinical trials and more efficient and speedy market access.
More information on CABs can be found on the EURORDIS website.