ArticleIntractable & rare diseases research2026
From co-creation to compounding value: A new model of rare disease science communication in China.
Article in Intractable & rare diseases research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
For the vast rare disease patient community in China, science communication is crucial for bridging the information gap. However, the traditional, expert-led knowledge distribution model has proven insufficient to address the dual challenges of resource scarcity and low efficiency in the rare disease field. This paper introduces a new science communication model derived from practice in China. With "Patient-Driven Co-Creation" as its core, this model's ultimate goal transcends traditional information dissemination, aiming to empower the entire ecosystem through systematic value creation. Through an analysis of the practical model of the
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