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NONG Fengyu, ZHOU Yan'e, NONG Sheng, LlU Lingguang

( College of Publie Health and Management, Youjiang Medical University for Nationalities, Baise 533500, China)

Abstract (biective "To analvze the current situation of care services for rare diseases and put forward suggestionsfor improvement, in order to propose group care services system for rare diseases, improve the quality of life of rarediseases and their families, and promote social attention and support for rare diseases. Methods The literatureresearch method was used to analyze relevant policies and literature analysis, evaluate the needs of care services foipatients with rare diseases, analyze the existing relevant policies, systems, institutions, service mode and existingproblems in China, and explore their impact on the quality and accessibility of care services. Results Therehabilitation care for patients with rare diseases is still blank in the medical service system. Family care cannot meethe care needs of patients and their families , and professional care services are in urgent need. However, care service policy in China has certain limitations for rare diseases , and the quantity and quality of existing care services cannotmeet the growing demand for care. Conclusion To promote the construction of the care service system for rarediseases and improve the quality and accessibility of care services for rare diseases needs the support of thegovernment and all sectors of society, improve the policy guarantee of care services for rare diseases, enrich thechannels for obtaining funds, enrich the team of professional service personnel, and actively promote socialparticipation and innovation cooperation.

Keywords: rare disease; nursing services; social support ; quality of life

DOI:10.19296/j.cnki.1008-2409.2024-02-018

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