Patient Community Advisory Boards (CABs) are groups established and operated by patient advocates. They facilitate discussions (in a neutral setting) on the latest developments and challenges related to medical research and procedures in a specific disease area with the company or body conducting the research. A CAB is a group of patients who offer their expertise to sponsors of clinical research. For example, by being involved before a clinical study starts, patients help ensure that clinical studies are designed to take into account their real needs, resulting in higher quality research. CABs, with anywhere from seven to twenty patient advocate members, are involved in scientific as well as policy-related issues (ie, access). They provide expert advice to all stakeholders involved in the research, development and service provision of medical treatments.

The HHT CAB has been set up by HHT Europe with the support of EURORDIS, who have given extensive training to team members.

If you would like to engage with the HHT EU CAB please contact us.