Expanding awareness of Rare Diseases through social media: The experience of the Brazilian Rare Diseases Network

Rare diseases (RD), though individually rare, collectively affect millions globally, spanning 5 to 8 thousand distinct conditions with unique challenges. These conditions often lack comprehensive information. The Brazilian Rare Diseases Network (RARAS) is a nationwide collaborative initiative comprising 40 healthcare institutions that, among its objectives, seeks to improve the visibility of rare diseases and disseminate evidence-based information through social media. A retrospective descriptive analysis of RARAS' social media metrics from March 2021 to July 2025 used data from Meta Business Suite. Between March 2021 and July 2025, the RARAS Network’s social media platforms accumulated 11,772 followers on Instagram® and 1,529 on Facebook®. Followers were predominantly Brazilian, female, and most frequently aged 35–44 years. A total of 576 Instagram posts were analyzed. Posts classified as Awareness & Education achieved the highest mean reach and engagement, whereas reels significantly outperformed static images and carousels (p < 0.001). Posts published during Rare Disease Month (February) also demonstrated substantially greater reach and engagement than those published during the remaining months. These findings suggest that strategic content planning, multidisciplinary collaboration, and continuous refinement of digital communication approaches may contribute to expanding the dissemination of evidence-based information on rare diseases through social media.