Empowering rare disease patients through patient education: the new BehçeTalk programme

BACKGROUND: Educating patients and caregivers on their disease can improve their knowledge and promote the active involvement in the therapeutic decision-making process. Naturally, patient education programmes are critically important in rare systemic autoimmune diseases, where relevant knowledge and expertise still remain scattered. Behçet’s disease (BD) represents a challenging rare condition, characterized by a variable spectrum of disease profile and a relapsing course. RESULTS: Recently, BehçeTalk, an educational programme tailored for BD patients, families and caregivers with, was launched. BehçeTalk, entirely co-designed with BD patients, is offering educational on-line webinars on different aspects of the disease, as well support groups for patients and caregivers coordinated by a psychologist with specific expertise in BD. CONCLUSIONS: The therapeutical management of BD is often challenging and frequently includes off-label treatments. Considering the specificities of BD, providing a specific education on the disease to patients will lead to empower them in being part of the decision-making processes, in the self-management and in improving their quality of life. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41927-022-00247-1.