Albinism, a group of rare genetic conditions characterized by visual impairment and variable hypopigmentation, is extensively studied in biomedical research. However, the psychosocial aspects, particularly in France, remain under-investigated, contributing to the invisibility of this sensory disability.

The ALBIPSY project aimed to explore the lived experience of persons with albinism (PWAs) and their significant others (SOs), and to examine the role of dyadic adjustment in maintaining their quality of life.

This study employed a sequential mixed-methods design, beginning with an exploratory qualitative phase involving nine dyads (PWAs and one of their parents), followed by a correlational quantitative study covering the entire sample ( N = 38 dyads).

Qualitative results highlighted several critical themes, including the perception of albinism (as a disease or not), perceived difficulties, resources and facilitators, and the crucial role of the dyadic relationship in adaptation. Intriguingly, enhanced adaptive capacities sometimes co-existed with a significant, high subjective burden associated with albinism. Counter-intuitively, quantitative data suggested that higher levels of dyadic coping were associated with increased anxiety in PWA. This finding warrants further reflection on the influence of ableist norms, transmitted parental values, and the perception of albinism as an illness.

This paper reviews the main findings and underscores the necessity of a multidisciplinary approach sensitive to the relational dynamics and specific needs of PWA and their partners.