Various parties join hands to strengthen the management and protection of rare disease diagnosis and treatment_Guangming.com

On November 6, 2023, during the Sixth China International Import Expo, the 2023 Takeda Rare Disease and Hemophilia Special Press Conference “Defending the Future and Reviving a New Life” was successfully held. Among them, Takeda and the China Rare Disease Alliance once again deepened their cooperation and formally signed a letter of intent to upgrade their future strategic partners. The two parties hope that in the next three years, through the China Rare Disease Alliance’s resource platform in the fields of scientific research innovation and clinical treatment, as well as Takeda’s rich experience in the global field of rare diseases, they will focus on the construction of rare disease diagnosis and treatment capabilities, industrial development and disease management path exploration, Further deepen cooperation in academic cooperation, policy research and other fields to establish a scientific, systematic and standardized rare disease diagnosis and treatment model.

Li Linkang, executive chairman of the China Rare Disease Alliance, said: “Since the China Rare Disease Alliance and Takeda China first reached strategic cooperation in 2019, they have worked hand in hand in the past three years to jointly accelerate the construction of rare disease diagnosis and treatment capabilities in China and bring positive benefits to patients. Benefits. We are very happy to once again reach a long-term strategic partnership with Takeda, and continue to carry out in-depth cooperation in various aspects such as scientific research and innovation, diagnosis and treatment system construction, and treatment accessibility, so as to jointly solve the unmet urgent needs of patients with rare diseases. Let’s work together to improve the prevention and treatment of rare diseases in China.”

Rare diseases are one of Takeda’s core therapeutic areas globally. Thanks to the spillover effect of the CIIE and the Chinese government’s powerful measures to optimize approval reviews and accelerate the approval of new drugs, Takeda has approved five innovative drugs and treatment options for rare diseases in China in the past five years. , covering multiple disease areas such as Fabry, Gaucher, hereditary angioedema, etc. Three of the drugs have been included in medical insurance, helping patients upgrade from “drugs are available” to “affordable and good to use” and move into standardization The era of therapy.

In addition to accelerating the introduction of innovative products, Takeda China has also been actively practicing corporate social responsibility, improving public awareness of rare diseases through popular science, and striving for equal diagnosis and treatment opportunities for every rare disease patient. Taking Hereditary Angioedema (HAE) as an example, in order to continue to improve public awareness of the disease, during the CIIE, Takeda joined hands with patient organizations, clinical experts, industry stakeholders and other representatives from all walks of life to organize the “HAE Search Action” “CIIE Special Session” uses the patient’s onset characteristics as clues to encourage the public to actively participate in tracing interactions, thereby helping potential patients around them to diagnose as early as possible and passing on popular science from the CIIE venues to further distances.

Professor Zhi Yuxiang from the Department of Allergy, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences, said: “As a ‘frontline doctor warrior’ fighting against HAE, I have gone through a complete experience of knowing very little about HAE in China, having no cure, and then having a cure. Therefore, I am honored to join this science popularization relay activity. I believe that through the continuous attention of all sectors of society and the continuous efforts of our doctors, we can actively promote the development of multidisciplinary consultation for rare diseases and improve doctors. With our rare disease diagnostic capabilities, HAE ‘zero’ attacks will no longer be an unattainable goal in the future.”

For potential patients with HAE, C1 esterase inhibitor and complement C4 tests are important testing methods for the differential diagnosis of HAE. However, the geographical accessibility of testing is one of the important reasons why it is difficult to diagnose HAE patients. In order to improve early screening and early diagnosis of HAE, break the geographical limitations of HAE testing, and benefit more potential HAE patients, the Chinese Red Cross Foundation Jinyu Medical, JD Health and Takeda China jointly launched the “HAE 360° New Ecology” project. Cooperation ceremony. The project will rely on JD Health’s more than 600 million user traffic to screen high-risk HAE patients through online doctor consultations. Jinyu Medical Group will rely on its nationwide service network, high-quality testing capabilities and huge testing data to provide nearby blood collection and corresponding testing services to patients across the country to ensure the accessibility of testing for HAE high-risk patients across the country, thereby providing HAE patients with Create a 360° innovation ecosystem from online to offline.

In addition, in order to accelerate the upgrading of the rare disease diagnosis and treatment ecosystem construction and solve the problems of rare disease diagnosis and treatment. Takeda China and KingMed Medical officially signed a strategic cooperation agreement at this CIIE. In the next three years, both parties will leverage their respective resource advantages in medical testing, pathological diagnosis and innovative drug treatment, establish and improve industry diagnosis and treatment standards, explore innovative diagnosis and treatment models, provide patients with accurate and reliable testing technology and drugs, and further help strengthen social Understand rare diseases, improve the level of rare disease diagnosis and treatment, and promote the rapid development of rare disease prevention, diagnosis and treatment in China.

Adhering to the core concept of “patient first”, Takeda continues to pay close attention to the actual needs of China’s rare disease patient groups. In the future, Takeda will accelerate the introduction of innovative treatment solutions while working with all parties in the industry to provide patients with all-round support and multi-level guarantees from screening, diagnosis, disease management and medical services, and continue to contribute to China’s rare disease innovation ecosystem. construction and contribute to the grand goal of “Healthy China 2030”.

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责编：李然 ]