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Salivary gland carcinomas (SGCs) represent a rare and clinically challenging group of tumors. SGCs are highly heterogeneous, with histological subtypes showing distinct biological behaviors, dissemination patterns, and responses to therapy (Rached et al. 2024). Nevertheless, SGCs are often discussed as a single entity, disregarding biological differences among histological subtypes (Silva et al. 2024). Despite scientific advances, the rarity of SGCs contributes to fragmented epidemiological data, limited clinical guidelines, and scarce patient-centered resources. In Brazil, this scenario is particularly critical: the absence of national registries and dedicated associations leaves patients and professionals without structured information or support. Brazilian hospital cancer registries report an annual incidence of major SGCs ranging from 6 to 10 cases per million, while minor salivary gland tumors represent < 1% of oral lesions, with approximately one-third being malignant (Cohen Goldemberg et al. 2023; Bruzinga et al. 2023). Countries such as the United States, the United Kingdom, and France benefit from structured support to patients by organizations like the NIH Genetic and Rare Diseases Information Center, the Adenoid Cystic Carcinoma Foundation, Salivary Gland Cancer UK, or CORASSO. These initiatives provide reliable information, emotional support, and advocacy, helping patients navigate complex diagnoses and reducing isolation. Comparable institutions are lacking in Brazil, leaving patients and healthcare professionals without accessible, trustworthy information (Figure 1). Recent evidence highlights this disparity. A scoping review identified 25 non-profit organizations supporting patients with head and neck cancer, of which only 8% focused specifically on SGCs (Carnevali et al. 2025), underscoring the limited visibility of this group even in settings where advocacy for rare cancers is better established. In the absence of such structures in Brazil, patients frequently rely on the internet and social media as primary sources of information (Swoboda et al. 2018). However, limited regulation and inadequate fact-checking facilitate the proliferation of disinformation (Jeyaraman et al. 2023). Therefore, patients can be exposed to confusion, false expectations, and potentially harmful decisions (Jeyaraman et al. 2023). This highlights a paradox: although the academic field in Brazil continues to generate deep knowledge of international relevance, patients remain uninformed. Brazilian socioeconomic factors play an important role. Patients with cancer frequently face delayed diagnoses and treatment, with marked geographic and socioeconomic inequalities influencing access to timely care (de Oliveira et al. 2025). Health literacy remains critical, as informed patients are better able to evaluate treatment alternatives and adhere to complex regimens (Coughlin et al. 2020). When reliable information is lacking, patient autonomy and outcomes are compromised, particularly among populations with limited educational and economic resources (Cocchieri et al. 2025). Improving access to clear, evidence-based information is therefore essential. The creation of foundations dedicated to SGCs in Brazil could bridge the gap between academic knowledge and patient needs, promote health literacy, and support patient autonomy. Greater participation of healthcare professionals and scientific organizations in digital spaces, together with appropriate regulation of health-related content, may help limit the spread of misinformation. Ensuring access to accurate information represents both a scientific responsibility and a commitment to patient dignity and humane care. Ana Carolina Evangelista Colafemina: conceptualization, investigation, writing – original draft, validation. Luan César Silva: conceptualization, investigation, validation, writing – original draft. Alan Roger Santos-Silva: conceptualization, investigation, writing – review and editing, validation, supervision. Pablo Agustin Vargas: conceptualization, investigation, validation, writing – review and editing, supervision. Márcio Ajudarte Lopes: supervision, writing – review and editing, validation, investigation, conceptualization. The authors have nothing to report. The authors have nothing to report. The authors declare no conflicts of interest.