[Mobilization of Long Covid patients: from lived experience to the co-construction of research and care pathways].

Since 2020 Long Covid has prompted a global mobilization of patients, who have documented their symptoms, named the condition, and created support groups. This article analyses, through two associations, #ApresJ20 and Covid Long Enfants, how knowledge derived from patients' experiences has been integrated into the clinical definition of Long Covid, the organization of care pathways, and participatory research, in collaboration with clinicians and researchers. It highlights both the decisive contribution of this mobilization to the recognition and management of Long Covid and the persistent gaps in institutional support regarding prevention and investment in research and care.