Advancing Narcolepsy Advocacy: Bridging Patient Narratives and Systemic Change

Area of Science:

• Neurology
• Public Health
• Health Policy

Background:

• Narcolepsy is an underdiagnosed neurological disorder.
• Patients face diagnostic delays and cultural stigma impacting well-being and care access.
• Current advocacy is fragmented and lacks integration with health policy, especially in low-resource settings.

Purpose of the Study:

• Introduce the Stigma-to-Structure Advocacy Framework, an evidence-based model for narcolepsy advocacy.
• Systematically bridge patient narratives with structural changes to improve care.
• Address critical gaps in current advocacy models, including representation and cultural adaptation.

Main Methods:

• Drawing on recent evidence and patient testimonies.
• Analyzing global case studies of narcolepsy advocacy.
• Identifying gaps in representation, cultural context adaptation, and impact metrics.

Main Results:

• Current advocacy models have limited representation of youth and marginalized groups.
• Insufficient adaptation to diverse cultural contexts hinders effective advocacy.
• Lack of standardized impact metrics impedes progress measurement.

Conclusions:

• The framework's three pillars are narrative-driven awareness, clinical system integration, and policy activation.
• Five priority actions include developing outcome metrics, culturally responsive hubs, rare disease registry integration, peer mentoring, and policy reform.
• Advocacy must be redefined as a driver of structural transformation in sleep medicine, centering equity and collaboration.