Exploration of clinical teaching methods and humanistic care for rare disease hepatolenticular degeneration based on multi-site practice

LI Lingling, WANG Xiaoping

Journal of Neurology and Neurorehabilitation ›› 2026, Vol. 22 ›› Issue (3) : 20260009.

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Journal of Neurology and Neurorehabilitation ›› 2026, Vol. 22 ›› Issue (3) : 20260009. DOI: 10.12022/jnnr.2025-0236
Neurology

Exploration of clinical teaching methods and humanistic care for rare disease hepatolenticular degeneration based on multi-site practice

  • LI Lingling, WANG Xiaoping
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Abstract

Hepatolenticular degeneration (also known as Wilson's disease), as a rare inherited disorder of copper metabolism, presents complexities and multidisciplinary challenges in clinical diagnosis and treatment, requiring long-term patient management that addresses both physiological and psychological needs. With the advancement of the multi-site practice policy, the flow of medical resources has introduced new opportunities and challenges for the clinical education of hepatolenticular degeneration. Based on the author's personal experience with multi-site practice, this paper analyzes the innovation of multi-site practice on the clinical teaching of hepatolenticular degeneration, reviews the current status and difficulties of the integration of clinical teaching and humanistic care, and proposes optimization strategies such as establishing a cross-institutional "teaching-care" integration platform and developing standardized teaching modules. It further explores how to integrate existing resources through multi-site practice to achieve synergistic development in improving clinical teaching quality and enhancing humanistic care for patients, aiming to provide a reference for the clinical teaching and patient management of rare diseases.

Key words

Multi-site practice / Hepatolenticular degeneration (Wilson's disease) / Clinical teaching / Humanistic care / Rare disease

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LI Lingling, WANG Xiaoping. Exploration of clinical teaching methods and humanistic care for rare disease hepatolenticular degeneration based on multi-site practice[J]. Journal of Neurology and Neurorehabilitation. 2026, 22(3): 20260009 https://doi.org/10.12022/jnnr.2025-0236
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