Rare disease narratives on social media: A content analysis.

ABSTRACT:

Purpose

Social media provides an opportunity for the expression of people with rare conditions and may provide valuable insight into lived experiences to inform genomic care. Our objective was to describe the nature and content of rare disease video narratives on social media.

Methods

We reviewed content on a short-video-format social media website containing the tags of #raredisease, #raredisorder, or #raredisorders. Two authors independently coded videos for content matter and conducted thematic analysis using a mixed deductive-inductive approach. The demographic characteristics of the content and names of specific rare conditions were documented when available, as were the characteristics of the videos themselves.

Results

We reviewed 500 videos created by 299 uniqu

SUBMITTER: Park HJ 

PROVIDER: S-EPMC11925512 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature