In February, the National Health Commission of China released the first national list of rare diseases in China and reported that a national network to support the diagnosis and treatment of rare diseases is developed. 324 Chinese hospitals have joined the network, 12 of which are in Zhejiang. SAHZU serves as the leading hospital for the diagnosis and treatment of rare diseases in the province among the 12 hospitals.
As the leading hospital, SAHZU is responsible for setting up the system inside the Zhejiang and drafting policies and standards. Further, it is required to accept patients with rare diseases referred from other hospitals and to coordinate the medical resources for it.
Dr. Zhiying Wu, Chair of Neuroscience Research Center of SAHZU and a professor of Neurology who have studied rare diseases for over 30 years, said that the fact that there are many rare diseases each of them having various kinds of symptoms makes it very hard for doctors at county/community hospitals to notify and diagnose them, even harder to treat them. However, if rare disease could be diagnosed and treated in its early stage, there is big chance that patients with rare diseases could live a normal life. Therefore, “the establishment of the network could greatly improve the diagnosis rate of rare diseases as well as make the best use of our medical resources by promoting hierarchical management of diseases and referral between hospitals”, said Dr. Wu.
An initial plan of the network proposed by Dr. Wu who also works as the charge person of the Zhejiang section, is firstly to give training courses about rare diseases and teach the doctors how to provide help to patients with rare diseases; and secondly, to actively work with other member hospitals to expand the medical insurance coverage for medicines for rare conditions.