{"id":55205,"date":"2025-05-07T09:14:10","date_gmt":"2025-05-07T13:14:10","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/%e6%9c%83%e8%ad%b0%e4%ba%ae%e9%bb%9e%ef%bc%9aerdheim-chester-%e7%97%85%e4%b8%ad%e7%9a%84%e5%a4%a7%e8%85%a6%e5%92%8c%e7%9c%bc%e7%9d%9b%e5%8f%83%e8%88%87\/"},"modified":"2025-05-21T16:18:18","modified_gmt":"2025-05-21T20:18:18","slug":"%e6%9c%83%e8%ad%b0%e4%ba%ae%e9%bb%9e%ef%bc%9aerdheim-chester-%e7%97%85%e4%b8%ad%e7%9a%84%e5%a4%a7%e8%85%a6%e5%92%8c%e7%9c%bc%e7%9d%9b%e5%8f%83%e8%88%87","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh-hant\/%e6%9c%83%e8%ad%b0%e4%ba%ae%e9%bb%9e%ef%bc%9aerdheim-chester-%e7%97%85%e4%b8%ad%e7%9a%84%e5%a4%a7%e8%85%a6%e5%92%8c%e7%9c%bc%e7%9d%9b%e5%8f%83%e8%88%87\/","title":{"rendered":"\u6703\u8b70\u4eae\u9ede\uff1aErdheim-Chester \u75c5\u4e2d\u7684\u5927\u8166\u548c\u773c\u775b\u53c3\u8207"},"content":{"rendered":"<p><strong>\u6f14\u8b1b\u8005\uff1aEli Diamond\uff0c\u91ab\u5b78\u535a\u58eb<\/strong><br \/>\n<strong>\u6642\u9593\uff1a10\uff1a50 AM \u2013 11\uff1a05 AM<br \/>\n\u65e5\u671f\uff1a2025\u5e745\u670826\u65e5 \u60a3\u8005\u548c\u5bb6\u5ead\u805a\u6703<br \/>\n<\/strong><\/p>\n<p>\u5c0d\u65bc\u8a31\u591a\u60a3\u6709 Erdheim-Chester \u75c5 \uff08ECD \u7684\u4eba\u4f86\u8aaa\uff0c\u5927\u8166\u548c\u773c\u775b\u7684\u53d7\u7d2f\u53ef\u80fd\u662f\u6700\u56f0\u96e3\u548c\u6700\u53ef\u6015\u7684\u4f75\u767c\u75c7\u4e4b\u4e00\u3002\u9019\u5c31\u662f\u70ba\u4ec0\u9ebc\u9019\u6b21\u7531 <strong>Eli Diamond \u535a\u58eb<\/strong>\u4e3b\u6301\u7684\u6703\u8b70\u662f\u60a3\u8005\u548c\u5bb6\u5ead\u805a\u6703\u7684\u91cd\u8981\u7d44\u6210\u90e8\u5206\u3002Diamond \u535a\u58eb\u4e0d\u50c5\u662f\u7d10\u7d04\u7d00\u5ff5\u65af\u9686\u51f1\u7279\u7433\u764c\u75c7\u4e2d\u5fc3\u7684\u9818\u5148\u795e\u7d93\u816b\u7624\u5b78\u5bb6\uff0c\u9084\u662f ECDGA \u91ab\u5b78\u9867\u554f\u59d4\u54e1\u6703\u4e3b\u5e2d\u548c\u5c08\u6ce8\u65bc ECD \u7684\u81e8\u5e8a\u7814\u7a76\u7684\u5148\u9a45\u3002  <\/p>\n<h3>\u4ed4\u7d30\u89c0\u5bdf\u5927\u8166\u548c\u773c\u775b\u53d7\u7d2f<\/h3>\n<p>\u773e\u6240\u5468\u77e5\uff0cECD \u6703\u5f71\u97ff\u591a\u500b\u5668\u5b98\uff0c\u5728\u6240\u6709\u78ba\u8a3a\u500b\u9ad4\u4e2d\uff0c\u591a\u9054\u4e00\u534a\u6703\u5f71\u97ff\u4e2d\u6a1e\u795e\u7d93\u7cfb\u7d71\u3002\u9019\u53ef\u80fd\u5c0e\u81f4\u5e73\u8861\u56f0\u96e3\u3001\u8996\u529b\u554f\u984c\u3001\u982d\u75db\u6216\u5fc3\u7406\u529f\u80fd\u8b8a\u5316\u7b49\u7665\u72c0\u3002\u5728\u67d0\u4e9b\u60c5\u6cc1\u4e0b\uff0c\u773c\u90e8\u53d7\u7d2f\u5305\u62ec\u5c0e\u81f4\u773c\u540e\u75bc\u75db\u6216\u58d3\u8feb\u611f\u7684\u773c\u7736\u5f8c\u816b\u584a\u3002\u5c0d\u65bc\u8a31\u591a\u60a3\u8005\u4f86\u8aaa\uff0c\u9019\u4e9b\u7665\u72c0\u53ef\u80fd\u6703\u9010\u6f38\u51fa\u73fe\uff0c\u4e26\u4e14\u5f88\u5bb9\u6613\u88ab\u8aa4\u8a8d\u70ba\u662f\u5176\u4ed6\u75be\u75c5\u2014\u2014\u5c0e\u81f4\u8a3a\u65b7\u5ef6\u9072\u3002   <\/p>\n<p>Diamond \u535a\u58eb\u7684\u6703\u8b70\u5c07\u5e6b\u52a9\u51fa\u5e2d\u8005\u77ad\u89e3\uff1a<\/p>\n<ul>\n<li>\u7576\u524d\u79d1\u5b78\u63ed\u793a\u4e86 ECD \u4e2d\u5927\u8166\u548c\u773c\u775b<strong>\u5982\u4f55\u4ee5\u53ca\u70ba\u4f55<\/strong>\u53d7\u5230\u5f71\u97ff\u3002<\/li>\n<li>\u54ea\u4e9b <strong>\u7665\u72c0<\/strong> \u6700\u5e38\u898b\uff0c\u54ea\u4e9b\u7665\u72c0\u61c9\u4fc3\u4f7f\u53ca\u6642\u8207\u8b77\u7406\u63d0\u4f9b\u8005\u4ea4\u8ac7\u3002<\/li>\n<li>\u5982\u4f55\u4f7f\u7528 <strong>\u5f71\u50cf\u5b78\u6aa2\u67e5<\/strong> \u4f86\u76e3\u6e2c\u795e\u7d93\u7cfb\u7d71\u548c\u773c\u90e8\u53d7\u7d2f\u60c5\u6cc1\u3002<\/li>\n<li>\u95dc\u65bc <strong>\u9577\u671f\u7d50\u679c<\/strong>\u7684\u77ad\u89e3\uff0c\u4ee5\u53ca\u6cbb\u7642\u5982\u4f55\u6539\u5584\u6216\u7a69\u5b9a\u7665\u72c0\u3002<\/li>\n<\/ul>\n<p>\u672c\u6b21\u6f14\u8b1b\u9084\u5c07\u5411\u51fa\u5e2d\u8005\u4ecb\u7d39 Diamond \u535a\u58eb\u6b63\u5728\u9818\u5c0e\u7684\u5e7e\u9805\u6b63\u5728\u9032\u884c\u7684\u7814\u7a76\uff0c\u5305\u62ec\u5c0d <strong>\u9776\u5411\u6cbb\u7642\u5c0d\u795e\u7d93\u7cfb\u7d71\u5f71\u97ff<\/strong>\u7684\u8abf\u67e5\uff0c\u4ee5\u53ca\u6d3b\u6aa2 <strong>\u6280\u8853\u7684\u6539\u9032<\/strong> \uff0c\u65e8\u5728\u4f7f\u8166\u90e8\u6216\u773c\u7736\u75c5\u8b8a\u60a3\u8005\u7684\u8a3a\u65b7\u66f4\u5b89\u5168\u3001\u66f4\u6e96\u78ba\u3002<\/p>\n<h3>\u70ba\u4ec0\u9ebcDr. Diamond \u7684\u5de5\u4f5c\u5f88\u91cd\u8981<\/h3>\n<p>\u5728\u904e\u53bb\u5341\u5e74\u4e2d\uff0cDiamond \u535a\u58eb\u4e00\u76f4\u8655\u65bc ECD \u7814\u7a76\u4e2d\u8a31\u591a\u6700\u6709\u610f\u7fa9\u7684\u9032\u5c55\u7684\u6700\u524d\u6cbf\u3002\u4ed6\u9818\u5c0e\u4e86 vemurafenib \u548c cobimetinib \u7b49\u85e5\u7269\u7684\u81e8\u5e8a\u8a66\u9a57\uff0c\u9019\u4e9b\u85e5\u7269\u5df2\u7372\u5f97 FDA \u6279\u51c6\u7528\u65bc ECD \u60a3\u8005\u7684\u9019\u4e9b\u6cbb\u7642\u3002\u4ed6\u767c\u8868\u4e86\u5927\u91cf\u95dc\u65bc ECD \u76f8\u95dc\u795e\u7d93\u7cfb\u7d71\u7665\u72c0\u7684\u6587\u7ae0\uff0c\u4e26\u8207\u4ed6\u4eba\u5171\u540c\u5275\u7acb\u4e86 ECD \u60a3\u8005\u767b\u8a18\u8655\uff0c\u8a72\u5de5\u5177\u5141\u8a31\u60a3\u8005\u5728\u81ea\u5df1\u7684\u5bb6\u4e2d\u70ba\u5168\u7403\u7814\u7a76\u505a\u51fa\u8ca2\u737b\u3002  <\/p>\n<p>\u4ed6\u5c07\u81e8\u5e8a\u7d93\u9a57\u3001\u7814\u7a76\u77e5\u8b58\u548c\u540c\u60c5\u5fc3\u7368\u7279\u5730\u7d50\u5408\u5230\u4ed6\u7684\u5de5\u4f5c\u4e2d\u3002\u4ed6\u660e\u767d\uff0c\u5f71\u97ff\u5927\u8166\u548c\u773c\u775b\u7684\u7665\u72c0\u4e0d\u50c5\u5c0d\u8eab\u9ad4\u69cb\u6210\u6311\u6230\uff0c\u800c\u4e14\u5728\u60c5\u611f\u4e0a\u4e5f\u6703\u8b93\u4eba\u4e0d\u77e5\u6240\u63aa\u3002\u5728\u4ed6\u7684\u9818\u5c0e\u4e0b\uff0c\u60a3\u8005\u5f97\u5230\u4e86\u66f4\u65e9\u7684\u8a3a\u65b7\u3001\u66f4\u6709\u6548\u7684\u8b77\u7406\u548c\u66f4\u5927\u7684\u5e0c\u671b\u3002  <\/p>\n<h3>\u672c\u6b21\u6703\u8b70\u7684\u9810\u671f\u5167\u5bb9<\/h3>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/PFG-Program-2025-05-06-English-DRAFT.pdf\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"border-image alignleft wp-image-55085\" title=\"\u908a\u6846\u5716\u50cf\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/PFG-Program-Cover-English-scaled.jpg\" alt=\"\" width=\"216\" height=\"306\"><\/a>\u9019\u5c07\u662f\u4e00\u500b\u91cd\u9ede\u7a81\u51fa\u3001\u6613\u65bc\u7406\u89e3\u7684\u6f14\u793a\u6587\u7a3f\uff0c\u9069\u7528\u65bc\u53ef\u80fd\u6b63\u5728\u61c9\u5c0d\u795e\u7d93\u7cfb\u7d71\u7665\u72c0\u3001\u8996\u529b\u8b8a\u5316\u6216\u53ea\u662f\u5e0c\u671b\u66f4\u591a\u5730\u77ad\u89e3 ECD \u9019\u65b9\u9762\u7684\u60a3\u8005\u548c\u8b77\u7406\u4eba\u54e1\u3002\u96d6\u7136\u4e0d\u6703\u63d0\u4f9b\u500b\u4eba\u91ab\u7642\u5efa\u8b70\uff0c\u4f46 Diamond \u535a\u58eb\u7684\u898b\u89e3\u53ef\u4ee5\u5e6b\u52a9\u51fa\u5e2d\u8005\u66f4\u597d\u5730\u5411\u81ea\u5df1\u7684\u91ab\u751f\u63d0\u51fa\u554f\u984c\uff0c\u4e26\u66f4\u77ad\u89e3\u9019\u7a2e\u75be\u75c5\u7684\u8907\u96dc\u6027\u3002 <\/p>\n<p>\u7121\u8ad6\u60a8\u662f\u4f5c\u70ba\u60a3\u8005\u3001\u5bb6\u5ead\u6210\u54e1\u9084\u662f\u91ab\u7642\u5c08\u696d\u4eba\u54e1\u53c3\u52a0\uff0c\u672c\u6b21\u6703\u8b70\u90fd\u662f\u4e00\u500b\u76f4\u63a5\u5411\u4e16\u754c\u4e0a\u6700\u91cd\u8981\u7684 Erdheim-Chester \u75c5\u795e\u7d93\u7cfb\u7d71\u53d7\u7d2f\u5c08\u5bb6\u4e4b\u4e00\u5b78\u7fd2\u7684\u6a5f\u6703\u3002<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/PFG-Program-2025-05-06-English-DRAFT.pdf\" target=\"_blank\" rel=\"noopener\">\u4e0b\u8f09\u8b70\u7a0b<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u6f14\u8b1b\u8005\uff1aEli Diamond\uff0c\u91ab\u5b78\u535a\u58eb \u6642\u9593\uff1a10\uff1a50  [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":58757,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[422],"tags":[520,504,514,528,510,502,526,2237,522,524,506],"class_list":["post-55205","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-","tag-ecd-","tag-ecdga-zh-hant","tag-ecd","tag-erdheimchester-","tag-makerarevisible-","tag-2237","tag-raredisease","tag-506"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/55205","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/comments?post=55205"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/55205\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media\/58757"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media?parent=55205"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/categories?post=55205"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/tags?post=55205"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}