The Swiss Narcolepsy Network (SNaNe)

Abstract

The Swiss Narcolepsy Network (SNaNe) was founded in 2017 as a non-profit organization with the vision of improving the care of patients with narcolepsy, central disorders of hypersomnolence (CDH), and rare sleep disorders. The SNaNe aims at maximizing the speed of diagnosis, minimizing difficulties stemming from the rare nature of these conditions, and providing patients with optimum health care throughout the course of their disease. In addition, the SNaNe promotes education, awareness, and research on CDH and rare sleep disorders. The article reports the current structure, organization, and the following main activities of the SNaNe: (1) the discussion of complex patient cases; (2) the organization of the Swiss Narcolepsy Days; (3) the coordination of multicenter research projects (e.g., SPHYNCS and iSPHYNCS studies); (4) the establishment of an anonymous Swiss registry for CDH patients (SNaNe Data Registry); (5) the collaboration with the national patients’ organization (SNAG); and (6) the collaboration with other national and international scientific, professional, and patients’ (eNAP) organizations.