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Intractable Rare Dis Res. 2019 Aug;8(3):224-225. doi: 10.5582/irdr.2019.01097.

Focusing on basic data and a model of healthcare security for rare diseases: The Multidisciplinary Expert Seminar on Healthcare Security for Rare Diseases in China was held in Beijing.

Author information

1
Department of Health Policy Research, Shanghai Health Development Research Center, Shanghai Medical Information Center, Shanghai, China.
2
Shanghai Foundation for Rare Diseases, Shanghai, China.

Abstract

On August 10, 2019, the Multidisciplinary Expert Seminar on Healthcare Security for Rare Diseases in China was held in Beijing. The seminar was organized by the Shanghai Foundation for Rare Disease and Shanghai Health Development Research Center and advised by the China Alliance of Rare Diseases. Participants in this seminar included government officials, experts in clinical medicine, pharmacy, epidemiology, health economics, and law as well as representatives from rare disease patient organizations. The participating experts cited three key elements of healthcare security, including its concept, data, and mechanism, to solve the problem of health care security for patients with rare diseases at the national level. Collection of basic data and creation of a model of healthcare security for rare diseases were discussed. Data collection should be actively promoted. Creation of a special zone to ensure medical care for patients with rare diseases should be considered. Healthcare security should be classified, which means that basic medical insurance provides better care for rare diseases that respond to treatment, and channels should be established for rare diseases that respond poorly to treatment.

KEYWORDS:

Rare disease; expert discussion; healthcare security; multidiscipline

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