China Red Foundation and others promote the upgrading of the rare disease diagnosis and treatment ecosystem

According to the definition of the World Health Organization, a rare disease is a disease in which the number of patients accounts for 0.
65‰-1‰ of the total population
.
On the 27th, the Chinese Red Cross Foundation and others expressed that they would promote the upgrading of the rare disease diagnosis and treatment ecosystem
.
According to medical experts, there are currently more than 7,000 rare diseases in the world, and more than 1,400 have been found in China
.
Although the incidence of rare diseases is low, there are many types of diseases, and the population base of China is large, so the total number of patients with rare diseases in China is not large
.
On the 27th, the signing ceremony of the strategic cooperation between the Red Cross Foundation of China and Takeda China was held in Beijing
.
Both parties will continue to promote the construction of a rare disease patient care and protection system and a rare disease diagnosis and treatment system to further enhance patient welfare
.
According to this strategic cooperation, the two parties will jointly create a comprehensive diagnosis and treatment plan based on the actual needs of rare disease patients.
For example, improve the diagnosis and treatment capabilities of rare diseases, promote the improvement of the overall treatment level of rare disease patients in China, shorten the diagnosis time of rare diseases , and strengthen the public We will build a whole-course management ecosystem for patients with rare diseases, and jointly establish special funds for rare disease-related projects
.
The two parties will also promote the development of China's specific rare diseases such as hereditary angioedema, Fabry disease, Gaucher disease, etc.
through a series of activities and projects such as doctor education, patient education, patient assistance, and patient care, and improve innovative drugs for patients Accessibility and ability to manage the entire disease course
.
In the next two years, the two parties will gradually advance the implementation of various tasks and jointly promote the construction and development of the field of rare disease diagnosis and treatment
.
Bei Xiaochao, vice chairman and secretary-general of the China Red Cross Foundation, said that this cooperation is expected to further promote the improvement of China's rare disease diagnosis and treatment level, promote the development of China's rare disease industry, bring health gospel to patients , and help healthy China Construction
.
Shan Guohong, President of Takeda China, stated that, adhering to the principle of "Patient First", Takeda has always paid close attention to the unfulfilled needs of patients with rare diseases in China.
While focusing on accelerating the introduction of innovative products in the field of rare diseases, it actively explores the diagnosis and treatment of rare diseases.
We are committed to realizing all-round patient care and creating a healthy life and a bright future for patients with rare diseases in China
.
The reporter learned that the China Red Foundation continues to care for patients with rare diseases, and for patients with rare diseases who face difficulties in treatment and expensive medications, they have successively treated patients with chubby Willy syndrome, Marfan syndrome, and hereditary bullae since 2014.
Provide assistance to patients with rare diseases such as epidermolysis and Crohn’s disease
.
In July 2019, the China Red Foundation officially launched the "Rare Disease Care Action" to further promote the rescue of rare diseases in terms of humanitarian assistance, doctor training, and platform construction.
As of February 2021, it has assisted more than 600 patients with rare diseases.
, Training 118 rare disease physicians, patient education and popular science beneficiaries more than 20,000 person-times
.
Experts including Wang Lin, secretary-general of the Joint Conference of Chairpersons of National Rare Disease Academic Groups, and Li Dingguo, chairman of Shanghai Rare Disease Prevention and Control Foundation, attended the signing ceremony
.
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