12月28日,在第十七届国际罕见病日专题论坛上,首都儿科研究所所长张建指出,罕见病不仅是一个医学问题,更是一个社会问题。这场论坛探讨了当前儿童罕见病的诊疗现状及面临的困难。张建所长表示,罕见病的防治面临诸多挑战,需要医患、政府、社会各界共同努力。他建议加大科研投入力度,改进诊疗路径,加强患儿救助和家庭支持。会上专家学者就儿童罕见病的基因检测、诊断标准、用药规范等内容进行了交流讨论。They agreed that rare diseases in children need more social attention.
Title: Rare diseases in children become a social concern
Keywords: Children, Rare diseases, Social issues
News content: On December 28, at the 17th International Rare Disease Day Special Forum, Zhang Jian, director of the Capital Institute of Pediatrics, pointed out that rare diseases are not only a medical problem, but also a social problem. The forum discussed the current diagnosis and treatment status of rare diseases in children and the difficulties faced. Director Zhang said that the prevention and treatment of rare diseases faces many challenges, and requires the joint efforts of doctors and patients, government, and all sectors of society. He suggested increasing research investment, improving diagnostic pathways, and strengthening rescue for sick children and family support. Experts and scholars at the meeting exchanged views on the gene testing, diagnostic criteria, medication norms and other aspects of rare diseases in children.
【来源】http://www.chinanews.com/life/2024/02-28/10171535.shtml
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