近年来,不少罕见病跃入我们的视野:从引发全球关注的“冰桶挑战”为“肌萎缩性脊髓侧索硬化症(ALS)”患者(俗称“渐冻人”)筹款,到有一个可爱名字的“瓷娃娃”病(也就是成骨不全症),到被称为“月亮孩子”的白化病……罕见病不仅给患者及其家庭带来无尽的痛苦,也造成不少社会问题。那么,什么是罕见病?有什么有效的治疗方法和预防措施?在我国,罕见病的防 In recent years, many rare diseases have leapt into our field of vision: from the “ice bucket challenge” that causes global concern to patients with ALS (commonly known as “cold-blooded” “) Fund-raising, to a” porcelain doll “disease (that is, osteogenesis imperfecta) with a cute name, to albinism known as” Moon Kid "... Rare disease not only gives patients and their families Endless suffering, but also cause a lot of social problems. So, what is a rare disease? What effective treatment and preventive measures? In our country, rare disease prevention