<p>Improving health care requires patient involvement. For people with Lynch syndrome, general and specific areas can be identified in which it is important for health care professionals to collaborate with patients to improve care. This collaboration is mutually beneficial; better care for the patients, reduction of work load and higher chance of funding of research proposals for health care professionals. Patient organizations are comprised of patients that are often more educated and motivated to participate in discussions and workshops. In addition, patient organizations have access to a network of patients that can provide a broad overview of the needs and requirements of this group. Thus, patient organizations are the partners of choice in the collaboration of health care providers and patients. In this commentary, I outline the areas in which physicians and patients should collaborate; Providing information, research and clinical trial design, and psychological care and peer support.</p>