I suffer from a serious rare disease: A challenge to sing and choreograph on TikTok

Rare diseases are extremely severe, disabling pathologies. In total, 7% of the world’s population suffers from a rare disease. To publicize their plight, people suffering from such diseases and their families have turned to Facebook, Twitter, and YouTube, among other social media platforms, as effective tools for sharing their problems, calling for greater investment in research and to cope with their day-to-day hardships. Symbols and representations defining rare diseases that have been established in the media and on social networking services have thus gained in prominence. This research asks what the emergence of the TikTok app, the second most downloaded in 2019 and the first in 2020, has meant for how these diseases are made visible. To answer this question, 2,750 TikTok posts with the 11 most popular hashtags related to rare diseases in six languages were analyzed between 1 January 2019 and 30 September 2020. The findings confirm that, against this highly personalized backdrop, the widespread use of TikTok is changing an already consolidated discourse of protest and fostering the creation of new codes with unpredictable results for the recognition and support needed by this marginalized community.