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罕见病叙事关爱AI计划暨罕见病照护者加油行动启动
Bei Ke Cai Jing· 2025-09-14 10:35
Core Viewpoint - The Beijing Pain Challenge Public Welfare Foundation has launched an AI narrative care program for rare disease patients, aiming to provide multi-dimensional support and address the psychological and social isolation faced by these individuals [1][2]. Group 1: AI Narrative Care Program - The program focuses on using AI narrative tools to help "silent" patients express their stories safely, which can serve as both a self-healing archive and a means to raise public awareness about rare diseases [2]. - The AI narrative tool is specifically trained on rare disease data, allowing it to accurately reflect the psychological experiences and emotions of patients, thereby making their "silent voices" heard and understood [2]. Group 2: Offline Support Initiatives - In addition to online support, the foundation plans to conduct offline workshops to provide education, peer companionship, and caregiver support, with three workshops scheduled between 2025 and 2026 [3]. - The workshops aim to alleviate psychological stress for patients and focus on issues that concern rare disease patients, ultimately leading to the formation of initiatives and action plans to build a sustainable mutual support community [3].