Over 200 experts and scholars have convened in Shanghai for the 13th China Rare Disease Summit, a three-day event which opened on Friday focused on advancing the diagnosis and treatment of rare diseases.
The summit features academic discussions and roundtables on topics such as drug regulation and clinical trials.
According to the World Health Organization, rare diseases affect a small percentage of the global population, typically between 0.065 and 0.1 percent. In China alone, more than 20 million people are living with rare medical conditions.
"Given that rare diseases are often congenital or hereditary, it is necessary to move the threshold forward to reduce the incidence of rare diseases and long-term health damage," said Sun Kun, president of Xinhua Hospital Affiliated to Shanghai Jiaotong University School of Medicine.
Due to the lack of relevant epidemiological data, China's understanding of the incidence and prevalence of some rare diseases is still limited, according to Sun.
"More efforts are needed from clinical doctors and scientists to support the development of more rare disease diagnosis and treatment methods. Global cooperation is also needed," said Sun.
Increased attention to rare diseases in China has led to significant progress in recent years. Social organizations like the Illness Challenge Foundation, medical institutions, and government agencies have all played vital roles in addressing the challenges faced by patients and their families.
A key achievement is the establishment of a national medical service network for rare diseases. In 2019, the National Health Commission designated 324 medical institutions to join this network, enabling collaboration on diagnosis, treatment, and patient care for rare diseases. Today, the network comprises 419 medical institutions nationwide.
Rare disease summit held in Shanghai to promote related diagnosis, treatment
