A shared journey and a call for action for persons living with inherited retinal diseases.

Abstract

Two recently published qualitative studies-conducted in Australia and Singapore-coincided with Rare Disease Day 2025, and they delved into the profound psychosocial impacts of inherited retinal diseases (IRDs) among working-age adults. Both studies independently identified similar themes related to identity disruption, social invisibility, emotional turbulence and the significant challenges of adapting to progressive vision loss. This serendipitous alignment highlights the universal challenges and struggles of IRD across distinct cultures, and the findings illuminate how IRDs transcend medical diagnoses, demanding coordinated psychosocial support and policy-level interventions. This commentary reflects upon the implications for healthcare and society at large, and urges a clarion call to action. Improving psychosocial support, enhancing public awareness and advocating for empathetic care models and inclusive policies for persons affected by IRDs are imperatives. In doing so, we can build more equitable systems that address the realities of IRDs and empower individuals to lead fulfilling lives despite their vision impairment.