Core Insights - The 2025 China Rare Disease Conference was held in Beijing from September 20 to 21, highlighting the growing focus on rare diseases in the country [1] - Currently, there are 419 hospitals in the national rare disease diagnosis and treatment collaboration network, with the list of rare diseases expanded to 207 types [1] - Approximately 100 rare disease medications have been included in the national medical insurance drug list, indicating increased accessibility for patients [1] - In 2024, the medical insurance fund will allocate 8.6 billion yuan for rare disease medications, accounting for 7.7% of the total payment for drugs during the agreement period [1]

新华社北京9月21日电 题：约100种罕见病用药进医保！生命与希望在集结 新华社记者李恒、彭韵佳 这是一场关乎生命与希望的对话，一次科学与温情的交融。 9月20日至21日，2025年中国罕见病大会在京举行。大会传递的数据温暖且令人振奋：目前全国罕见病 诊疗协作网医院达419家，罕见病直报系统现有626家医院参加登记，罕见病目录扩展至207种病种，已 有约100种罕见病用药被纳入国家医保药品目录。 医者与患者、科研人员与药企代表……这不仅仅是一场探讨罕见病诊疗与关爱的会议，更如同一束光， 穿透"罕见"的迷雾，照亮一个国家正以制度之善、科技之新、人文之暖守护"罕见病群体"。 保障更全！多层次保障体系为患者点亮生命之光—— 最新数据显示，国家医保药品目录内罕见病用药覆盖42个罕见疾病种类。2024年医保基金为协议期内罕 见病药品支付86亿元，约占协议期药品总支付的7.7%。 "医保基金坚持'尽力而为、量力而行'，但罕见病用药保障不能仅靠基本医保。"国家医保局医药服务管 理司司长黄心宇说，我国正构建基本医保、大病保险、医疗救助三重保障体系，并积极探索商业健康保 险、社会慈善等多元保障路径。 从药物研发、快速审评、纳入 ...

Core Viewpoint - Shenzhen Wego Biological Products Co., Ltd. successfully won the bidding for state-owned construction land use rights in Guangming District, Shenzhen, for a price of RMB 60.4 million, which aligns with the company's strategic development plan for establishing an intelligent industrial base [1] Group 1: Land Acquisition Details - The company participated in the bidding for the land use rights of plot A628-0045, covering an area of 69,986.43 square meters, with a usage period of 30 years [1] - The funding for this land acquisition will come from the company's own or self-raised funds, and it does not constitute a related party transaction or a major asset restructuring as per regulations [1] Group 2: Strategic Implications - The acquisition of the land is intended to support the company's intelligent industrial base project, which is crucial for the company's high-quality development [1] - Upon completion of the new industrial base, the company plans to relocate its operations and will cooperate with the Guangming District government to facilitate the recovery of the existing factory site [1]

Core Viewpoint - The National Health Commission of China has released the "Guidelines for the Diagnosis and Treatment of 86 Rare Diseases (2025 Edition)" to enhance the standardization of rare disease treatment and ensure medical quality and safety [1][2]. Group 1: Rare Disease Guidelines - The guidelines provide clear instructions on clinical manifestations, diagnostic methods, and medical interventions for the 86 rare diseases included in the second batch of the rare disease directory [1][2]. - The guidelines reflect the era's demand for comprehensive health care throughout an individual's life cycle, emphasizing the importance of early screening and treatment for rare diseases [1]. Group 2: Specific Rare Diseases - Achondroplasia (ACH) is highlighted as a genetic disorder leading to disproportionate short stature, with typical clinical features including shortened proximal long bones, macrocephaly, and distinctive facial characteristics [2]. - Currently, there is only one approved treatment for ACH abroad, while no specific drug has been approved in China, and treatment mainly focuses on symptom management and complications [2]. Group 3: Government Initiatives and Statistics - The Chinese government has shown increasing attention to rare diseases, with the first batch of rare disease directory published in 2018, which included 121 diseases and corresponding treatment guidelines [2]. - Approximately 20 million people in China are affected by rare diseases, with over 200,000 new patients each year [2]. - As of January 1, 2025, the new national medical insurance drug list will include 13 new medications for rare diseases, significantly reducing the financial burden on patients [2].

在六一儿童节来临之际,5月29日,"健康童行·育见未来"2025儿童健康科普行动启动会在京举行。本次科 普行动由京东健康发起、人民健康支持,国内儿科领域权威专家、医疗机构代表,以及来自哈药集团、葵 花药业、双鲸药业、江中药业、罗氏制药、泽德曼等药企负责人参加了此次启动会。 据了解,在今年儿童节期间,京东健康将联合上海交通大学医学院附属上海儿童医学中心、广州医科大学 附属妇女儿童医疗中心等权威机构专家,通过京东互联网医院开启系列科普直播,用通俗易懂的语言普及 儿童流感防治、营养补充、心理成长等方面的知识,更好地为广大家庭提供科学育儿支持。 今年六一儿童节期间,京东健康将启动"中国儿童关爱计划",家长通过京东APP搜索"中国儿童关爱计划", 添加企业微信进入私域后,即可免费享受7*24小时咨询服务,与更多家长交流育儿经验。 作为积极践行中国儿童用药安全的品牌,葵花药业精品儿药事业群总经理魏胜利表示,不为利来,不为利往, 小葵花要做有责任的品牌,而非只赚钱的品牌。 泽德曼董事长陈庚辉博士讲述了21年科研探索和12年临床实践的"破茧之路",以及用原创科研力量,守护 湿疹患儿健康的故事。他表示,希望打造更多创新成果,让 ...