Abstract B002: From delayed diagnosis to advocacy: A patient-led approach to addressing equity gaps in rare cancer care
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- 2026-07-21 07:15:56
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- 2026-07-21 07:15:56
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- Semantic Scholar2026-07-21 07:15:18Abstract B002: From delayed diagnosis to advocacy: A patient-led approach to addressing equity gaps in rare cancer care
Rare cancer patients frequently experience delayed diagnosis, limited awareness, and inequities in access to care. These challenges are particularly pronounced among adolescents and young adults (AYA) and culturally diverse populations, including South Asian communities, where stigma, low awareness, and cultural barriers contribute to delayed presentation. In AYA populations, symptoms may be underestimated or misattributed, further contributing to delays in timely diagnosis. Patient perspectives remain underrepresented in research, education, and care design. This work is informed by lived experience as a stage IV cancer survivor and independent patient advocate. Through patient-led initiatives, including community engagement sessions, digital storytelling and collaborations with healthcare and research organizations, efforts were made to increase awareness, reduce stigma, and improve communication between patients and care systems. Outreach included adolescents and young adults (AYA) and culturally diverse communities, with a focus on addressing stigma and improving early awareness. Patient-led advocacy contributed to increased awareness of early symptoms, improved engagement with healthcare conversations, and stronger trust between patients and providers. Digital platforms expanded reach and accessibility, creating safe spaces for shared experiences and encouraging timely care-seeking behaviors. Participation in advisory roles and conferences further integrated patient perspectives into research and system-level discussions. Patient-driven approaches are essential to addressing inequities in rare cancer care. Integrating lived experience into research, education, and healthcare design can improve awareness, trust and outcomes. Future efforts should prioritize inclusive patient engagement to ensure equitable impact across diverse populations. Generative AI tools were used to support editing and clarity of this abstract; all content reflects the author’s original work and has been reviewed for accuracy. Harjeet Kaur. From delayed diagnosis to advocacy: A patient-led approach to addressing equity gaps in rare cancer care [abstract]. In: Proceedings of the AACR Special Conference in Cancer Research: Breaking Barriers in the Fight against Rare Cancers; 2026 Jul 18-20; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Res 2026;86(14_Suppl):Abstract nr B002.