Beijing News (reporters Wang Kala and Zhang Xiulan) According to incomplete statistics from the Rare Disease Information Network, during the 6th CIIE, 41 rare disease drugs were showcased, covering nearly 30 rare disease fields such as pulmonary arterial hypertension, Huntington's disease, and infantile spasms. During the exhibition period, multiple companies held public welfare activities.
According to the statistics from the Rare Disease Information Network compiled by reporters from The Beijing News, in terms of the number of products showcased by companies, Takeda China displayed the most varieties of rare disease drugs, including Lanadelumab, Icatibant Acetate, and others, with a total of 8 products covering 6 therapeutic areas. Roche, Johnson & Johnson, and Pfizer each showcased 5, 4, and 4 products respectively. Teva Pharmaceutical Industries, Boehringer Ingelheim, Merck & Co., Novartis, Bayer, GSK, Aspen Pharmacare, Amgen, Dr. Reddy's Laboratories, AstraZeneca, Novo Nordisk, Sanofi, and AbbVie/Allergan also exhibited one to two rare disease drugs each.
Boehringer Ingelheim Announces Collaboration with IQVIA and Others at CIIE to Launch a One-Stop Digital Care Center for Generalized Pustular Psoriasis (GPP)Boehringer Ingelheim announced at the CIIE its collaboration with IQVIA and others to jointly create and launch a one-stop digital care center for Generalized Pustular Psoriasis (GPP) (GPP Care Center), dedicated to providing GPP patients with support information including disease education, auxiliary disease identification, and a GPP diagnosis and treatment map. Patients can access professional and standardized disease education information and hospital information capable of diagnosis and treatment without leaving their homes. In September this year, GPP was included in the "Second Batch of Rare Disease Catalogue" jointly formulated by six departments, including the National Health Commission. Currently, the "GPP Care Center" has successfully completed its preliminary trial operation, garnering over 700,000 impressions, more than 6,000 in-depth page views, and nearly 5,000 clicks on the GPP diagnosis and treatment map module.
For approximately 136,000 patients with hemophilia in China who are "trapped," Roche Pharmaceuticals China launched the "Orange Sailing Treasure Plan" at the CIIE in collaboration with partners from all walks of life. The event focuses on unmet needs of hemophilia patients and provides comprehensive support for children with hemophilia and their families across physical, financial, and emotional dimensions. It aims to build a future with "Zero Bleeds, No Burden, Zero Differences." Over the years, the treatment model for hemophilia has continuously evolved, and innovative treatments have emerged. Patients’ expectations for treatment have gradually shifted from "sustaining life" to "living like ordinary people." Non-factor therapies represented by Emicizumab have ushered in a new era of preventive treatment for hemophilia, making the goal of "zero bleeding" achievable. Beijing Chenxi Health Technology Co., Ltd., a subsidiary of Sinopharm Group, launched the "Friendly Companion" patient welfare program, aiming to enhance the accessibility and affordability of the innovative drug Emicizumab through commercial insurance claims.
GSK China Partners with Beijing Oasis of Life Public Welfare Service Center to Premiere "Living with Lupus, Embracing a New Life" Lupus Patient Series at CIIE. The series consists of three stories about female lupus patients, focusing on the growth and development challenges faced by children with lupus, marriage difficulties encountered by young women due to the disease, and fertility concerns among women of childbearing age. These films depict how patients and their families overcome the limitations imposed by the disease through standardized treatment, eventually achieving a brighter future. On this year’s World Lupus Day, both parties launched the "Living with Lupus" Systemic Lupus Erythematosus Awareness Education Project. They collected real-life experiences and stories from lupus patients across China, adapting them into the Lupus Patient Series. This initiative aims to educate the public about lupus, enhance accurate understanding among the general population and patients alike, improve the social environment for those living with lupus, and instill confidence in fighting the disease while pursuing a fulfilling life.
Proofread by Zhai Yongjun