BACKGROUND Health-related data available online is the most used source of information. In Brazil, more than 80% of its population uses the Internet for this purpose, particularly those diagnosed with a rare multisystem genetic disease, such as 22q11.2 Deletion Syndrome (22Q11.2 DS). This is primarily due to the lack of knowledge on the part of physicians and incomplete information received during routine consultations. However, one of the risks associated with online health data is that it lacks scientific validation. OBJECTIVE To improve access to trusted information, this study aims to evaluate the potential use of social media in Brazil as disseminators of scientific knowledge regarding 22q11.2 DS. METHODS Two social media accounts were created with the name @science.sd22q11.2, one on Instagram, and the other on Facebook RESULTS During the one year (2020-2021) of accounts activity, the majority of followers were females (80-90%), aged 35-44 years from Southeast (18.1%). The most frequently used words relevant to healthcare in posts with the highest reach on both pages include velopharyngeal insufficiency, speech, immunological changes, lymphocytes, and psychiatric disorders. CONCLUSIONS The absence of a record of followers from the North and Northeast restricts the potential use of the internet for scientific dissemination in Brazil. The low diversity of followers points to the use of the internet as a predictor of topics associated with 22q11.2 DS which deserve extra attention during medical care. Furthermore, these results serve as an additional indicator of the difficulty of accessing molecular diagnosis in association with illiteracy rates in the North and Northeast.