The early diagnosis and management of oral potentially malignant disorders (OPMD) represent a unique opportunity to develop strategies that will prevent malignant transformation. Despite a high prevalence, awareness remains low, patient outcomes poor, and quality of life highly affected. How can patient advocacy groups (PAGs) bring more awareness to preneoplasia preceding oral cancers and help patients after the identification of a suspicious oral leukoplakia presented as white patches in the mouth? PAGs are today involved with awareness campaigns, lobbying, and education of both health care systems as well as the survivor and the newly diagnosed. PAGs are a link between the clinician and the patient, making sure that the medical terminology used is explained in layman language and that psychological support is available during and after treatment. This review outlines the actions that could be deployed by PAGs to successfully complete OPMD prevention challenge. The added value of researchers and patient representatives working together is the increased awareness of the problem. To know at which angle to best approach it for encouraging early diagnosis, improved education of disease signs and symptoms will condition effective prevention from the beginning.