Intractable Rare Dis Res. 2026;15(1):115-119. (DOI: 10.5582/irdr.2025.01063)

From co-creation to compounding value: A new model of rare disease science communication in China

Chen Y

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 Wonder Sir platform, this paper proposes for the first time the "Patient Compounding Value Model". This model demonstrates how intangible patient-lived experiences can be systematically transformed into tangible assets capable of driving scientific research, clinical optimization, and public policy, thereby providing a sustainable value-generation mechanism for the resource-scarce rare disease field.

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