ArticleNature and science of sleep2025
Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change.
Article in Nature and science of sleep, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
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