罕见病用药

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卫光生物: 关于竞得土地使用权并签署成交确认书的公告
Zheng Quan Zhi Xing· 2025-09-07 09:15
证券代码:002880 证券简称:卫光生物 公告编号:2025-043 深圳市卫光生物制品股份有限公司 本公司及董事会全体成员保证信息披露的内容真实、准确、完整,没有虚假记载、误 导性陈述或重大遗漏。 深圳市卫光生物制品股份有限公司(以下简称公司)于2025年8月15日召开 第四届董事会第二次会议,审议通过了《关于拟参与竞拍国有建设用地使用权的 议案》,同意公司参与竞拍深圳市国有建设用地使用权出让公告(深土交告〔2025〕 的光明区马田街道宗地号为A628-0045的国有建设用地使用权挂牌出让活动,以 人民币60,400,000元(陆仟零肆拾万元)的价格成功竞得上述地块的使用权,并 签署了《成交确认书》(深土交成〔2025〕29号)。 公司本次参与竞得土地使用权事项的资金来源为自有资金或自筹资金,不构 成关联交易,也不构成《上市公司重大资产重组管理办法》规定的重大资产重组。 现将有关情况公告如下: 第十三条"医药"的第 2 项"新药开发与产业化:拥有自主知识产权的创新药和改 良型新药、儿童药、短缺药、罕见病用药,重大疾病防治疫苗、新型抗体药物、 重组蛋白质药物、核酸药物、生物酶制剂、基因治疗和细胞治疗药物" ...
软骨发育不全等86个罕见病病种诊疗指南发布
Xin Hua She· 2025-07-10 07:55
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].
与健康“童”行!京东健康联合多方推动儿童用药安全与科学育儿普及
Zhong Jin Zai Xian· 2025-05-31 03:28
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 ...