The Rare Bleeding Disorders Network

China’s renewed attention on rare diseases and the special case of Shanghai as an example for the rest of the country

China’s renewed attention on rare diseases and the special case of Shanghai as an example for the rest of the country

An article published in Intractable and Rare Diseases Research outlines the advances incurred by the new National Network to Collaborate on Diagnosis and Treatment of Rare Diseases. It includes 324 hospitals and aims to set up a practical mechanism for an effective alliance by different tiers of the healthcare system. It has decided to focus on six priorities:

  •  to establish a mechanism for collaboration;
  • to implement standards of care;
  •  to enhance quality control;
  • to ensure the supply of drugs;
  • to set up a registry;
  • to enhance clinical research.

The more general case of Shanghai and its rare disease policy initiatives is presented in another article. It describes the recent developments such as the establishment of the Shanghai Rare Diseases Diagnosis and Treatment Center, Shanghai Children's Rare Diseases Diagnosis and Treatment Center, and Shanghai Rare Diseases Specialist Clinic in February 2018, and how they improved the accessibility of medical care and services for rare diseases patients. The authors suggest that Shanghai can be taken as a model for the rest of China.


These initiatives are in synch with the international trend of raised awareness, action and harmonisation in the field of rare diseases.

Intractable Rare Dis Res. 2018 Nov;7(4):291-294. Intractable Rare Dis Res. 2019 Feb;8(1):78-79.