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　　三九養(yǎng)生堂記者 鄧肯·蓋伊 報道

精彩|　　近??(jin)日??(ri)??，由??(you)中??(zhong)國??(guo)罕??(han)見??(jian)病??(bing)聯(lián)??(lian)盟?(meng)、中??(zhong)國??(guo)紅??(hong)十??(shi)字??(zi)基??(ji)金??(jin)會??(hui)、全??(quan)國??(guo)罕??(han)見??(jian)病??(bing)診??(zhen)療??(liao)協(xié)??(xie)作??(zuo)網(wǎng)?(wang)辦??(ban)公??(gong)室??(shi)等?(deng)共??(gong)同??(tong)主??(zhu)辦??(ban)的?(de)“2023年??(nian)中??(zhong)國??(guo)罕?(han)見??(jian)病??(bing)大??(da)會??(hui)”在??(zai)北??(bei)京??(jing)開??(kai)幕?(mu)??。??來??(lai)自??(zi)全??(quan)國??(guo)罕??(han)見??(jian)病??(bing)政??(zheng)策??(ce)制??(zhi)定??(ding)、臨??(lin)床?(chuang)診??(zhen)療??(liao)、藥??(yao)物??(wu)研??(yan)發(fā)??(fa)、藥?(yao)品??(pin)保??(bao)障??(zhang)等??(deng)的??(de)數(shù)?(shu)萬??(wan)名??(ming)同??(tong)道??(dao)和??(he)罕??(han)見??(jian)病??(bing)患??(huan)者??(zhe)在??(zai)線??(xian)上??(shang)線??(xian)下??(xia)參??(can)與??(yu)了??(le)會??(hui)議??(yi)???！　??(guo)家??(jia)衛(wèi)??(wei)生??(sheng)健??(jian)康?(kang)委??(wei)醫(yī)??(yi)政??(zheng)司??(si)司??(si)長?(chang)焦??(jiao)雅??(ya)輝??(hui)在??(zai)開??(kai)幕??(mu)式??(shi)中?(zhong)介??(jie)紹?(shao)??，國??(guo)家??(jia)衛(wèi)??(wei)生??(sheng)健??(jian)康??(kang)委??(wei)深??(shen)入??(ru)貫??(guan)徹?(che)黨??(dang)中??(zhong)央??(yang)國??(guo)務(wù)??(wu)院??(yuan)決??(jue)策??(ce)部??(bu)署??(shu)??，圍??(wei)繞??(rao)人??(ren)民??(min)群?(qun)眾??(zhong)看?(kan)病??(bing)就??(jiu)醫(yī)??(yi)“急??(ji)難??(nan)愁??(chou)盼??(pan)”的??(de)問??(wen)題??(ti)開??(kai)展??(zhan)一??(yi)系??(xi)列??(lie)工??(gong)作??(zuo)??，推??(tui)動??(dong)提??(ti)升??(sheng)罕?(han)見??(jian)病??(bing)的??(de)管??(guan)理??(li)水??(shui)平??(ping)??。??2023年?(nian)9月??(yue)??，國??(guo)家??(jia)衛(wèi)??(wei)生??(sheng)健??(jian)康??(kang)委??(wei)聯(lián)??(lian)合??(he)6部??(bu)委??(wei)發(fā)??(fa)布??(bu)《第??(di)二??(er)批??(pi)罕??(han)見??(jian)病??(bing)目??(mu)錄?(lu)》??，罕??(han)見??(jian)病??(bing)目?(mu)錄?(lu)病?(bing)種??(zhong)增??(zeng)加??(jia)至??(zhi)207種??(zhong)；通??(tong)過??(guo)建??(jian)立??(li)診??(zhen)療??(liao)協(xié)??(xie)作??(zuo)網(wǎng)??(wang)、制??(zhi)定??(ding)診??(zhen)療??(liao)規(guī)??(gui)范??(fan)、開??(kai)展??(zhan)醫(yī)??(yi)務(wù)?(wu)人??(ren)員?(yuan)培??(pei)訓(xùn)??(xun)、推??(tui)廣??(guang)多??(duo)學(xué)??(xue)科??(ke)會?(hui)診??(zhen)模??(mo)式??(shi)、建??(jian)立??(li)罕??(han)見??(jian)病??(bing)質(zhì)??(zhi)控??(kong)中??(zhong)心?(xin)、規(guī)??(gui)劃??(hua)國??(guo)家?(jia)罕??(han)見??(jian)病??(bing)醫(yī)??(yi)學(xué)??(xue)中??(zhong)心??(xin)并??(bing)制??(zhi)定??(ding)設(shè)??(she)置?(zhi)標(biāo)??(biao)準(zhǔn)??(zhun)??，全??(quan)面?(mian)健??(jian)全??(quan)罕??(han)見??(jian)病??(bing)診??(zhen)療??(liao)體??(ti)系??(xi)并??(bing)提??(ti)升??(sheng)救??(jiu)治??(zhi)能??(neng)力??(li)；截??(jie)至??(zhi)2023年??(nian)9月??(yue)??，我??(wo)國??(guo)已??(yi)累??(lei)計??(ji)登??(deng)記??(ji)約??(yue)78萬??(wan)例??(li)罕??(han)見??(jian)病??(bing)病??(bing)例??(li)??，為??(wei)完??(wan)善??(shan)罕??(han)見??(jian)病??(bing)管??(guan)理??(li)制?(zhi)度??(du)提??(ti)供??(gong)了??(le)科??(ke)學(xué)?(xue)依??(yi)據(jù)??(ju)??。

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