The National Health Commission recently issued the Notice on Establishing the National Rare Disease Treatment Cooperation Network, which is meant to strengthen the diagnosis and treatment of rare diseases. PUMCH became the only state-level leading hospital.
The Commission plans to select 324 Chinese hospitals who have been handling relatively more rare disease cases to form the Network, which will include one state-level leading hospital, 32 provincial-level leading hospitals and 291 member hospitals.
According to the Notice, responsibilities of the state and provincial leading hospitals include: formulate work standards, organize trainings and academic conferences, accept difficult cases referred by member hospitals, coordinate resources within the Network, refer patients who are clearly diagnosed and in stability or recovery period to member hospitals, formulate follow-up plans and guide the work in member hospitals. Responsibilities of member hospitals are: diagnosis, treatment and long-term management of general cases, prompt transfer of difficult cases to leading hospitals, and follow-up according to the plans of leading hospitals. Before the end of March provincial authorities will issue an implementation plan for the Network.
The Network is expected to carry out relatively concentrated treatment and two-way transfer of rare disease cases, give full play to quality medical resources and strive for the goal of early discovery, early diagnosis, adequate treatment and management of rare disease cases.
At a press conference of the Commission on February 13, Jiao Yahui, deputy director of Bureau of Medical Administration of the Commission, briefed on the Commission's efforts on the treatment of rare disease cases. Zhang Shuyang, vice president of PUMCH, deputy director of Rare Disease Treatment and Steering Experts Committee of the Commission, deputy director and secretary general of China Alliance for Rare Diseases, briefed on China's efforts on rare diseases and reported on PUMCH's efforts as the leading hospital. Supported by the state, said Zhang, PUMCH has taken the lead in China's rare disease cohort study, the building of a national data bank and research into diagnosis and pathology.