Patient Involvement and Rare Diseases in Italy: Narratives, Spirituality, and Legitimation in Healthcare.

Public representations of rare diseases often depict patients as neglected and isolated. In response, initiatives promoting patient involvement have emerged, with illness narratives considered as key tools. However, the relationship between narratives and involvement remains underexplored. Based on ethnographic research conducted in Piedmont (Italy), I explore the narratives of two patients, which are deeply entangled with spiritual and religious perspectives, and explore the forms of involvement that emerged within the clinical space. I suggest that, depending on how moral and structural conditions intertwine, patients may be differently legitimized: roles of "experts of experience" or "implicated actors" arose within the field.