{"id":2625,"date":"2020-05-29T17:01:37","date_gmt":"2020-05-30T00:01:37","guid":{"rendered":"http:\/\/wishesforelliott.flywheelsites.com\/?p=2625"},"modified":"2022-06-20T18:06:40","modified_gmt":"2022-06-21T01:06:40","slug":"improving-the-quality-of-rare-childhood-epilepsy-care","status":"publish","type":"post","link":"https:\/\/deepconnections.net\/zh_hk\/2020\/05\/29\/improving-the-quality-of-rare-childhood-epilepsy-care\/","title":{"rendered":"\u63d0\u9ad8\u7f55\u898b\u5152\u7ae5\u7672\u7647\u7684\u8b77\u7406\u54c1\u8cea"},"content":{"rendered":"<p class=\"wp-block-paragraph\">\u672c\u6b21\u8b77\u7406\u54c1\u8cea\u7db2\u8def\u7814\u8a0e\u6703\u7531 Gabrielle Conecker \u4e3b\u6301\uff0c\u5979\u662f Elliott \u7684\u6bcd\u89aa\uff0c\u60a3\u6709 SCN8A \u76f8\u95dc\u7672\u7647\u75c7\u548c\u56b4\u91cd\u7684 DEE\uff0c\u4e5f\u662f <a href=\"https:\/\/www.wishesforelliott.com\/\">\u827e\u5229\u6b50\u7279\u7684\u9858\u671b <\/a>\u548c DEE-P \u9023\u63a5\u3002<\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\n<p class=\"wp-block-paragraph\">\u9019\u662f 2020 \u5e74 5 \u6708 27 \u65e5 DEE-P Connections \u7db2\u8def\u7814\u8a0e\u6703\u7684\u9304\u97f3 <em>\u201c\u63d0\u9ad8\u7f55\u898b\u5152\u7ae5\u7672\u7647\u8b77\u7406\u7684\u54c1\u8cea\u201d <\/em>\u5176\u4e2d\u5411\u6211\u5011\u4ecb\u7d39\u4e86\u6b63\u5728\u9032\u884c\u7684\u5169\u9805\u91cd\u5927\u52aa\u529b\uff0c\u4ee5\u63d0\u9ad8\u56b4\u91cd\u767c\u80b2\u6027\u8166\u75c5\u548c\u7672\u7647\u6027\u8166\u75c5 (DEE) \u60a3\u8005\u7684\u7672\u7647\u8b77\u7406\u54c1\u8cea\u3002\u9019\u500b\u7db2\u8def\u7814\u8a0e\u6703\u662f\u8207\u6240\u6709\u5c0f\u7d44\u6210\u54e1\u5354\u8abf\u7b56\u5283\u7684\u3002<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><strong>\u6211\u5011\u7684\u5c0f\u7d44\u6210\u54e1\u90fd\u662f\u7f55\u898b\u7672\u7647\u7684\u4e0d\u61c8\u5021\u5c0e\u8005\uff0c\u5305\u62ec\uff1a<\/strong><\/h3>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>\u4f86\u81ea\u5c0f\u5152\u7672\u7647\u5b78\u7fd2\u91ab\u7642\u4fdd\u5065\u7cfb\u7d71 (PELHS) \u7684\u8cc7\u8a0a\uff1a<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u963f\u52aa\u666e\u00b7\u5e15\u7279\u723e <\/strong>\u2013 \u5168\u570b\u5152\u7ae5\u91ab\u9662\u5152\u79d1\u795e\u7d93\u75c5\u5b78\u79d1\u9577\u3001\u4fc4\u4ea5\u4fc4\u5dde\u7acb\u5927\u5b78\u91ab\u5b78\u9662\u81e8\u5e8a\u5152\u79d1\u548c\u795e\u7d93\u75c5\u5b78\u526f\u6559\u6388<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u827e\u7c73\u8d0a\u76ae<\/strong> \u2013 8 \u6b72\u827e\u746a\u7684\u7236\u6bcd\uff0c\u5979\u4e5f\u60a3\u6709\u7672\u7647\u75c7\u3002 Amy \u65bc 2012 \u5e74\u958b\u59cb\u5f9e\u4e8b\u75c5\u60a3\u6b0a\u76ca\u5021\u8b70\u5de5\u4f5c\uff0c\u591a\u5e74\u4f86\u4e00\u76f4\u5728\u5404\u500b\u59d4\u54e1\u6703\u4efb\u8077\uff0c\u76ee\u524d\u64d4\u4efb PELHS \u7684\u5bb6\u9577\u4ee3\u8868\u3002\u827e\u7c73\u8207\u5979\u7684\u4e08\u592b\u548c\u4e09\u500b\u5b69\u5b50\u4f4f\u5728\u5bc6\u897f\u6839\u5dde\u5b89\u5a1c\u5821\u3002<br><\/p>\n\n\n\n<h3 class=\"has-normal-font-size wp-block-heading\"><em>\u4f86\u81ea\u7672\u7647\u5b78\u7fd2\u91ab\u7642\u4fdd\u5065\u7cfb\u7d71 (ELHS)\uff1a<\/em><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u5091\u592b\u00b7\u5e03\u8d6b\u54c8\u7279<\/strong> \u2013 \u5c0f\u5152\u795e\u7d93\u79d1\u91ab\u751f\u548c\u7f8e\u570b\u7672\u7647\u57fa\u91d1\u6703\u9867\u554f<br><br><strong>\u59ae\u53ef\u00b7\u83ab\u745e<\/strong> \u2013 \u60a3\u6709\u7672\u7647\u75c7\u7684\u7f85\u5357\u7684\u7236\u6bcd\uff1b\u7672\u7647\u57fa\u91d1\u6703\u7684\u4f01\u696d\u6148\u5584\u5b98\u54e1\u548c CHOP \u60a3\u8005\u5bb6\u5ead\u5925\u4f34\u3002<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"DEE-P - 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