Chinese Red Cross Foundation and Takeda China Announce Strategic Collaboration to Advance Rare Disease Diagnosis and Treatment Ecosystem

Yiyao Network, June 29 — According to the definition by the World Health Organization, a rare disease is a condition with a prevalence of 0.65‰ to 1‰ in the total population. On the 27th, the Chinese Red Cross Foundation and other organizations announced plans to further upgrade the diagnosis and treatment ecosystem for rare diseases.

 

Medical experts indicate that there are currently over 7,000 rare diseases worldwide, with more than 1,400 identified in China. Although the incidence rate of rare diseases is low, the wide variety of disease types, coupled with China's large population base, means that the total number of rare disease patients in China is substantial.

 

On the 27th, the Strategic Cooperation Signing Ceremony between the Chinese Red Cross Foundation and Takeda China was held in Beijing. Both parties will continue to advance the development of a patient care and support system and a diagnosis and treatment system for rare diseases, further enhancing patient welfare. Under this strategic cooperation, the two parties will jointly develop comprehensive diagnosis and treatment solutions based on the actual needs of rare disease patients, such as enhancing rare disease diagnosis and treatment capabilities, promoting the improvement of the overall treatment level for rare disease patients in China, and shortening rareDiseasetime to diagnosis, enhance public and patient awareness of rare diseases, establish a comprehensive full-course disease management ecosystem for rare disease patients, jointly set up dedicated funds for rare disease-related projects, etc.

 

Both parties will also promote the development in China in the field of specific rare diseases such as hereditary angioedema, Fabry disease, and Gaucher disease by implementing a series of activities and programs, including physician education, patient education, patient assistance, and patient care, thereby enhancing patients' access to innovative medicines and improving comprehensive disease management capabilities. Over the next two years, both parties will progressively advance the implementation of these initiatives and jointly promote the capacity building and development of the rare disease diagnosis and treatment sector.

 

Bei Xiaochao, Vice President and Secretary-General of the Chinese Red Cross Foundation, stated that this collaboration is expected to further advance the diagnostic and treatment standards for rare diseases in China, promote the development of the rare disease sector, and bring to patientsHealthA boon, supporting the Healthy China initiative.

 

Shan Guohong, President of Takeda China, stated that guided by the principle of “patients first,” Takeda remains closely attuned to the unmet needs of rare disease patients in China. While focusing on accelerating the introduction of innovative therapies in the rare disease field, Takeda is actively exploring integrated solutions for diagnosis, treatment, and patient access, committed to delivering comprehensive patient care and creating a healthier life and brighter future for rare disease patients in China.

 

The reporter learned that the Chinese Red Cross Foundation has remained committed to supporting patients with rare diseases. Addressing the challenges of difficult treatment access and high medication costs, the Foundation has, since 2014, successively provided assistance to patients with various rare diseases, including Prader-Willi syndrome, Marfan syndrome, hereditary epidermolysis bullosa, and Crohn's disease. In July 2019, the Foundation officially launched the "Rare Disease Care Action" to further advance rare disease relief efforts through humanitarian assistance, physician training, and platform development. As of February 2021, it had cumulatively assisted over 600 rare disease patients, trained 118 rare disease physicians, and its patient education and science popularization programs had benefited more than 20,000 individuals.

 

Wang Lin, Secretary-General of the National Joint Conference of Chairpersons of Rare Disease Academic Societies, Li Dingguo, Chairman of the Shanghai Rare Disease Prevention and Treatment Foundation, and other experts attended the signing ceremony. (End)