Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.

Abstract

We introduce the Stigma-to-Structure Advocacy Framework, a novel, evidence-based model designed to transform narcolepsy advocacy by systematically bridging patient narratives with structural change. Narcolepsy remains a profoundly underdiagnosed and misunderstood neurological disorder, with persistent diagnostic delays and pervasive cultural stigma undermining patient well-being and access to care. Despite recent progress in awareness and support, advocacy efforts remain fragmented and insufficiently integrated with health policy, particularly in low- and middle-income countries. This perspective advances a strategic evolution of narcolepsy advocacy through the Stigma-to-Structure Advocacy Framework, which is anchored in three pillars: narrative-driven awareness, clinical system integration, and policy activation. Drawing on recent evidence, patient testimonies, and global case studies, we identify critical gaps in current advocacy models, such as limited representation of youth and marginalized populations, insufficient adaptation to cultural contexts, and the absence of standardized impact metrics. For example, ongoing diagnostic delays and entrenched cultural stigma continue to impede timely care and social inclusion for many individuals. We outline five priority actions for the next decade: developing outcome metrics, building culturally responsive advocacy hubs, integrating narcolepsy into rare disease registries, expanding peer mentoring networks, and reforming policy frameworks. By centering equity, digital inclusion, and cross-sector collaboration, this framework aims to dismantle entrenched barriers and promote timely diagnosis, effective care, and social inclusion for all individuals with narcolepsy. We conclude by calling for a globally coordinated, patient-powered movement that redefines advocacy as a driver of structural transformation in sleep medicine.