Intractable Rare Dis Res. 2019;8(1):78-79. (DOI: 10.5582/irdr.2019.01024)

Network established to collaborate on diagnosis and treatment of rare diseases in China: A strategic alliance backed by tiered healthcare is the key to the future.

Ren QL, Wang JB


Rare diseases are an important public health issue and a challenge to healthcare. Over the past few years, China has actively worked to improve rare disease care and orphan drugs for rare diseases, but many challenges still remain. In order to further promote measures to combat rare diseases, the "National Network to Collaborate on Diagnosis and Treatment of Rare Diseases" was established by the National Health Commission of the People's Republic of China on February 12, 2019. This network for collaboration consists of 324 hospitals nationwide, and its aim is to set up a practical mechanism for an effective alliance by different tiers of the healthcare system. The strategy for collaboration includes six programs: I) to establish a mechanism for collaboration, ii) to implement standards of care, iii) to enhance quality control, iv) to ensure the supply of drugs, v) to set up a registry, and vi) to enhance clinical research. These programs will play a pivotal role in combating rare diseases in the future and eventually achieving the goal of creating a proper and consistent mechanism to treat and manage rare diseases.

KEYWORDS: Rare diseases, network for collaboration, tiered healthcare

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