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

DOI Web Site 2 Citations 2 References
  • Huang Rufang
    Chinese Organization for Rare Disorders
  • Wei Yunshu
    Chinese Organization for Rare Disorders
  • Hu Jiahao
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet
  • Kong Fanxin
    School of International Pharmaceutical Business, China Pharmaceutical University
  • He Jiangjiang
    Department of Health Policy Research, Shanghai Health Development Research center, Shanghai Medical Information Center
  • Yang Yan
    Department of Health Policy Research, Shanghai Health Development Research center, Shanghai Medical Information Center
  • Tang Mi
    Department of Health Policy Research, Shanghai Health Development Research center, Shanghai Medical Information Center
  • Jin Chunlin
    Department of Health Policy Research, Shanghai Health Development Research center, Shanghai Medical Information Center
  • Kang Qi
    Department of Health Policy Research, Shanghai Health Development Research center, Shanghai Medical Information Center

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Abstract

<p>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.</p>

Journal

  • Intractable & Rare Diseases Research

    Intractable & Rare Diseases Research 8 (2), 158-160, 2019-05-31

    International Research and Cooperation Association for Bio & Socio-Sciences Advancement

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