Narcolepsy Community Voice Report

Picture of Maria Picone
Maria Picone

Narcolepsy is a rare disease that affects 3 million people worldwide. People living with narcolepsy can experience significant disruptions in their daily routines that make it difficult to lead a normal life. Although impaired REM sleep, EDS, and cataplexy are the telltale features of this rare condition, the community’s conversations shed light on the effects that stretch far beyond these issues.

We captured the perspectives and experiences of people living with narcolepsy in the communities’ own words through an analysis of two social data sources: a Facebook group, “PWN4PWN,” and a subbredit “r/Narcolepsy.” This report includes activity from July 19, 2020 to July 19, 2021.

Thank you Feri Ascencion and PWN4PWN, Wake Up Narcolepsy, and Matthew Horsnell for collaborating on this project. Thank you Harmony Biosciences and Takeda for amplifying the voices of people living with narcolepsy by co-sponsoring this Community Voice Report.

Read the CVR here.