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Intractable Rare Dis Res. 2019 May;8(2):158-160. doi: 10.5582/irdr.2019.01069.

The progress of, challenges faced by, and future of rare disease patient organizations in China.

Author information

1
Chinese Organization for Rare Disorders, Shanghai, China.
2
Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Solna, Sweden.
3
School of International Pharmaceutical Business, China Pharmaceutical University, Nanjing, China.
4
Department of Health Policy Research, Shanghai Health Development Research center, Shanghai Medical Information Center, Shanghai, China.

Abstract

In addition to difficulties with treatment and expenses, patients with rare diseases in China greatly lack social support. In around 2000, Chinese patients with rare diseases and their families began to organize a series of charitable activities such as medical aid, public education, and policy advocacy. After nearly 20 years, organizations for Chinese patients with rare diseases have progressed. Many problems still remain, including a relatively small number of organizations, a low level of specialization, a lack of stability, limited social influence, and limited access to social resources. In order to spur the development of Chinese rare disease patient organizations, public education needs to be enhanced, policy support is needed, teams need to be created, and communication and cooperation need to be enhanced.

KEYWORDS:

China; Rare disease; patient organization

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