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\n

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\u201c\u6211\u4eec\u5f88\u8363\u5e78\u80fd\u591f\u901a\u8fc7\u672c\u6b21\u6d3b\u52a8\u5e2e\u52a9\u60a3\u8005\u7fa4\u4f53\u53d1\u58f0\uff0c\u52a0\u5f3a\u516c\u4f17\u5bf9\u7f55\u89c1\u75c5\u60a3\u8005\u7fa4\u4f53\u7684\u7406\u89e3\u4e0e\u652f\u6301\u3002\u201d<\/span>\u6b66\u7530\u4e2d\u56fd\u603b\u88c1\u5355\u56fd\u6d2a\u5148\u751f<\/b>\u8868\u793a\uff1a\u201c\u4f5c\u4e3a\u7f55\u89c1\u75c5\u9886\u57df\u7684\u4ee3\u8868\u6027\u4f01\u4e1a\uff0c\u6b66\u7530\u59cb\u7ec8\u79c9\u627f\u2018\u4ee5\u60a3\u8005\u4e3a\u5148\u2018\u7684\u7406\u5ff5\uff0c\u81f4\u529b\u4e8e\u52a0\u901f\u5f15\u8fdb\u7f55\u89c1\u75c5\u521b\u65b0\u6cbb\u7597\u836f\u7269\uff0c\u89e3\u51b3\u4e2d\u56fd\u7f55\u89c1\u75c5\u60a3\u8005\u7d27\u8feb\u7684\u672a\u6ee1\u8db3\u9700\u6c42\uff0c\u5e76\u643a\u624b\u793e\u4f1a\u5404\u754c\u52a0\u5f3a\u60a3\u8005\u5173\u7231\uff0c\u6253\u9020\u4ee5\u60a3\u8005\u4e3a\u4e2d\u5fc3\u7684\u7f55\u89c1\u75c5\u521b\u65b0\u751f\u6001\u7cfb\u7edf\uff0c\u5168\u65b9\u4f4d\u5730\u52a9\u529b\u4e2d\u56fd\u7f55\u89c1\u75c5\u60a3\u8005\u53ca\u5176\u5bb6\u5ead\u8fce\u6765\u6625\u5929\u3002\u201d<\/p>\n

\u5173\u4e8e\u56fd\u9645\u7f55\u89c1\u75c5\u65e5<\/b><\/p>\n

\u201c\u56fd\u9645\u7f55\u89c1\u75c5\u65e5\u201d\u662f\u4e00\u9879\u5168\u7403\u6027\u5e74\u5ea6\u6d3b\u52a8\uff0c\u65e8\u5728\u901a\u8fc7\u591a\u6837\u7684\u5f62\u5f0f\u63d0\u5347\u4eba\u4eec\u5bf9\u7f55\u89c1\u75c5\u53ca\u7f55\u89c1\u75c5\u7fa4\u4f53\u6240\u9762\u4e34\u95ee\u9898\u7684\u8ba4\u77e5\u3002\u201c\u56fd\u9645\u7f55\u89c1\u75c5\u65e5\u201d\u8bbe\u5728\u6bcf\u5e742\u6708\u7684\u6700\u540e\u4e00\u5929\uff08\u901a\u5e38\u4e3a2\u670828\u65e5\uff0c\u6216\u9022\u95f0\u5e74\u65f6\u4e3a2\u670829\u65e5 — \u65e5\u5386\u4e2d\u6700\u7f55\u89c1\u7684\u65e5\u671f\uff09\uff0c\u5bd3\u610f\u7f55\u89c1\u75c5\u7684\u7f55\u89c1\u6027\u4ee5\u53ca\u7f55\u89c1\u75c5\u60a3\u8005\u9762\u4e34\u7684\u56f0\u5883\u30022008\u5e74\uff0c\u6b27\u6d32\u7f55\u89c1\u75c5\u7ec4\u7ec7\u5728\u6b27\u6d32\u53d1\u8d77\u7b2c\u4e00\u5c4a\u201c\u56fd\u9645\u7f55\u89c1\u75c5\u65e5\u201d\u6d3b\u52a8\u3002\u76ee\u524d\uff0c\u201c\u56fd\u9645\u7f55\u89c1\u75c5\u65e5\u201d\u5df2\u7ecf\u63a8\u5e7f\u81f3\u5168\u740390\u591a\u4e2a\u56fd\u5bb6\u548c\u5730\u533a\u3002\u5728\u7f8e\u56fd\uff0c\u7f55\u89c1\u75c5\u65e5\u7531\u7f8e\u56fd\u7f55\u89c1\u75be\u75c5\u7ec4\u7ec7®\u53d1\u8d77\u3002<\/p>\n

\u6709\u5173\u56fd\u9645\u7f55\u89c1\u75c5\u65e5\u4e3e\u529e\u7684\u5168\u7403\u6d3b\u52a8\u4fe1\u606f\uff0c\u656c\u8bf7\u8bbf\u95eewww.rarediseaseday.org<\/a><\/p>\n

\u5173\u4e8e\u6b66\u7530\u5236\u836f<\/b><\/p>\n

\u6b66\u7530\u5236\u836f\uff08\u4e1c\u4eac\u8bc1\u5238\u4ea4\u6613\u6240\u80a1\u7968\u4ee3\u7801\uff1a4502<\/a>\uff09\uff08\u7ebd\u7ea6\u8bc1\u5238\u4ea4\u6613\u6240\u80a1\u7968\u4ee3\u7801\uff1aTAK\uff09\u662f\u4e00\u5bb6\u603b\u90e8\u4f4d\u4e8e\u65e5\u672c\u3001\u4ee5\u4ef7\u503c\u89c2\u4e3a\u57fa\u7840\u3001\u4ee5\u7814\u53d1\u4e3a\u9a71\u52a8\u7684\u5168\u7403\u751f\u7269\u5236\u836f\u516c\u53f8\u3002\u6b66\u7530\u81f4\u529b\u4e8e\u5c06\u79d1\u5b66\u7814\u53d1\u6210\u679c\u8f6c\u5316\u4e3a\u9ad8\u5ea6\u521b\u65b0\u836f\u54c1\uff0c\u4e3a\u60a3\u8005\u7684\u5065\u5eb7\u751f\u6d3b\u548c\u7f8e\u597d\u672a\u6765\u4fdd\u9a7e\u62a4\u822a\u3002\u6b66\u7530\u4e13\u6ce8\u4e8e\u56db\u5927\u6cbb\u7597\u9886\u57df\u7684\u836f\u7269\u7814\u53d1\uff1a\u80bf\u7624\u3001\u6d88\u5316\u3001\u795e\u7ecf\u79d1\u5b66\u53ca\u7f55\u89c1\u75c5\u9886\u57df\uff0c\u5e76\u9488\u5bf9\u8840\u6db2\u5236\u54c1\u53ca\u75ab\u82d7\u9886\u57df\u8fdb\u884c\u4e13\u9879\u7814\u53d1\u6295\u5165\u3002\u6211\u4eec\u59cb\u7ec8\u4e13\u6ce8\u4e8e\u9ad8\u5ea6\u521b\u65b0\u836f\u7269\u7684\u7814\u53d1\uff0c\u901a\u8fc7\u5f00\u62d3\u5168\u65b0\u6cbb\u7597\u65b9\u6848\u3001\u589e\u5f3a\u5408\u4f5c\u7814\u53d1\u5f15\u64ce\u5b9e\u529b\uff0c\u6253\u9020\u4e00\u6761\u7a33\u5065\u4e14\u5f62\u5f0f\u591a\u6837\u7684\u4ea7\u54c1\u7ba1\u7ebf\uff0c\u52a9\u529b\u6539\u5584\u4eba\u4eec\u7684\u751f\u6d3b\u3002\u6211\u4eec\u7684\u5458\u5de5\u904d\u5e03\u4e8e\u5927\u7ea680\u4e2a\u56fd\u5bb6\u548c\u5730\u533a\uff0c\u4e0e\u5f53\u5730\u533b\u7597\u5065\u5eb7\u5408\u4f5c\u4f19\u4f34\u643a\u624b\uff0c\u4e3a\u5168\u7403\u60a3\u8005\u5e26\u6765\u5065\u5eb7\u798f\u97f3\u3002<\/p>\n

\u6b66\u7530\u4e8e1994\u5e74\u8fdb\u5165\u4e2d\u56fd\uff0c\u6b66\u7530\u4e2d\u56fd\u603b\u90e8\u4f4d\u4e8e\u4e0a\u6d77\uff0c\u5728\u4e2d\u56fd\u5927\u9646\u7684\u4e3b\u8981\u4e1a\u52a1\u4e2d\u5fc3\u4f4d\u4e8e\u5317\u4eac\u3001\u4e0a\u6d77\u3001\u5929\u6d25\u3001\u5e7f\u5dde\u3001\u9999\u6e2f\u7279\u522b\u884c\u653f\u533a\u7b49\u57ce\u5e02\u548c\u5730\u533a\uff0c\u5e76\u5728\u5168\u56fd\u5404\u4e3b\u8981\u57ce\u5e02\u8bbe\u6709\u529e\u4e8b\u5904\uff0c\u76ee\u524d\u5728\u4e2d\u56fd\u62e5\u6709\u8d85\u8fc72000\u540d\u5458\u5de5\u3002\u968f\u7740\u4e2d\u56fd\u7ecf\u6d4e\u7684\u53d1\u5c55\u548c\u5bf9\u533b\u7597\u4fdd\u5065\u9700\u6c42\u7684\u4e0d\u65ad\u589e\u957f\uff0c\u4e2d\u56fd\u5df2\u7ecf\u6210\u4e3a\u6b66\u7530\u5168\u7403\u6700\u91cd\u8981\u7684\u65b0\u5174\u5e02\u573a\u4e4b\u4e00\u3002<\/p>\n

\u66f4\u591a\u4fe1\u606f\uff0c\u656c\u8bf7\u8bbf\u95eehttps:\/\/www.takeda.com<\/a><\/p>\n

\n\n\n\n\n\n\n
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[1] \u5168\u7403\u57fa\u56e0\u8ba1\u5212\u7f55\u89c1\u75c5\u5168\u7403\u57fa\u56e0\u4e8b\u5b9e\u8868 @ https:\/\/globalgenes.org\/rare-diseases-facts-statistics<\/a><\/span><\/p>\n<\/td>\n<\/tr>\n

\n

[2] 3\u6708\u8d77\u9996\u627921\u4e2a\u7f55\u89c1\u75c5\u836f\u54c1\u51cf\u63093%\u5f81\u589e\u503c\u7a0e\uff1ahttp:\/\/www.gov.cn\/fuwu\/2019-02\/14\/content_5365508.htm<\/a><\/span><\/p>\n<\/td>\n<\/tr>\n

\n

[2] Reuters (2017). For millions of Chinese with rare disease, some relief in sight. (Interview with Peter Fang). Online access<\/span><\/p>\n<\/td>\n<\/tr>\n

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[3] \u5f20\u4e3a\u6c11, \u9093\u4eae\u751f, \u5b5f\u5ca9,\u7b49. \u4e2d\u56fd\u4eba\u6208\u8c22\u75c5\u57fa\u56e0\u7a81\u53d8\u7684\u5206\u6790[J]. \u4e2d\u534e\u533b\u5b66\u6742\u5fd7, 2009, 89(48):3397-3400.<\/span><\/p>\n<\/td>\n<\/tr>\n<\/tbody>\n<\/table><\/div>\n

 <\/p>\n

<\/div>\n","protected":false},"excerpt":{"rendered":"

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https:\/\/globalgenes.org\/rare-diseases-facts-statistics [2] 3\u6708\u8d77\u9996\u627921\u4e2a\u7f55\u89c1\u75c5\u836f\u54c1\u51cf\u63093%\u5f81\u589e\u503c\u7a0e\uff1ahttp:\/\/www.gov.cn\/fuwu\/2019-02\/14\/content_5365508.htm [2] Reuters (2017). For millions of Chinese with rare disease, some relief in sight. 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