Recently, the “Central Special Lottery Public Welfare Fund to support the Rare Disease Diagnosis and Treatment Capacity Improvement Project” led by Peking Union Medical College Hospital, participated by the National Rare Disease Diagnosis and Treatment Network Hospital, and assisted by the China Rare Disease Alliance “start up. This project is guided by the National Health Commission and supported by the Central Lottery Public Welfare Fund of the Ministry of Finance. The project will provide free genetic testing for domestic rare disease patient groups, subsidize cooperative network hospitals to carry out multidisciplinary diagnosis and treatment (MDT) of rare disease cases, support rare disease doctors to carry out diagnosis and treatment capacity training, and take patients as the center to comprehensively improve the national rare disease diagnosis and treatment level. and implementation capacity.
Since the 18th National Congress of the Communist Party of China, the Central Committee of the Communist Party of China and the State Council have attached great importance to the prevention and protection of rare diseases. Work together to promote the prevention and protection of rare diseases in my country into the fast lane.
Facing the three major problems of low diagnosis rate, poor treatment ability, and lack of therapeutic drugs for rare diseases in my country, Peking Union Medical College Hospital took the lead, cooperated with the China Rare Disease Alliance, and actively communicated with the National Health and Health Commission. The Ministry of Finance applied for special funds to support the improvement of the diagnosis and treatment level and implementation capacity of rare diseases in my country. The project is highly valued by the Ministry of Finance. From 2021 to 2025, a special fund of 322 million yuan will be allocated through the central special lottery public welfare fund, which will support the genetic testing of more than 40,000 rare disease patients and their families, and support more than 9,000 rare disease cases. Disciplinary diagnosis and treatment, and carried out 825 rare disease diagnosis and treatment ability training for doctors.
The project will be under the guidance and supervision of the Ministry of Finance and the National Health Commission, led by Peking Union Medical College Hospital, jointly implemented by the China Rare Disease Alliance, and jointly implemented by 323 rare disease diagnosis and treatment collaboration network hospitals across the country . It not only directly benefits a large number of rare disease patients, but also provides a wealth of learning resources and training opportunities for hospitals and young doctors at all levels, greatly improving my country’s rare disease management level and diagnosis and treatment capabilities. Below, please let us learn together how patients and doctors can apply for free genetic testing, and which hospitals can do free genetic screening for rare diseases——
Text/Office of National Rare Disease Diagnosis and Treatment Network
Photo/Provided by the Office of National Rare Disease Diagnosis and Treatment Network
Editor/Xiao Xiong Chen Yan
Chief Editor/Chen Mingyan