超100种！我国医保罕见病用药数量创新高

Group 1 - The number of rare disease medications in China's medical insurance list has exceeded 100, covering over 50 types of diseases, marking a new high and providing hope for more patients [1][2] - The inclusion of the drug Lenvatinib for Langerhans cell histiocytosis in the national medical insurance list is significant, as it not only treats this condition but also extends its use to children and adolescents with neurofibromatosis type I [1] - The medical insurance currently covers over 50 rare disease types, but there is still a gap compared to the 207 rare disease types listed, due to some diseases lacking effective treatments and the high costs of certain medications [2] Group 2 - The introduction of commercial insurance for innovative drug listings by the National Medical Insurance Administration aims to improve access to rare disease medications, including the high-cost drug Daratumumab for neuroblastoma, which previously had a treatment cost in the hundreds of thousands [3] - Various initiatives, such as the publication of clinical guidelines for 86 rare disease types and the establishment of a national collaborative network for rare disease diagnosis and treatment, are enhancing life security for patients [3] - The combination of policy support and community efforts is fostering a more hopeful environment for rare disease patients, encouraging collaboration among families and sharing of experiences [4]