{"id":62994,"date":"2022-12-04T12:02:24","date_gmt":"2022-12-04T17:02:24","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/2022-ecd-%e5%85%a8%e7%90%83%e8%81%af%e7%9b%9f%e5%b9%b4%e5%ba%a6%e9%80%9a%e8%a8%8a\/"},"modified":"2025-08-23T17:25:25","modified_gmt":"2025-08-23T21:25:25","slug":"2022-ecd-%e5%85%a8%e7%90%83%e8%81%af%e7%9b%9f%e5%b9%b4%e5%ba%a6%e9%80%9a%e8%a8%8a","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh-hant\/2022-ecd-%e5%85%a8%e7%90%83%e8%81%af%e7%9b%9f%e5%b9%b4%e5%ba%a6%e9%80%9a%e8%a8%8a\/","title":{"rendered":"2022 ECD \u5168\u7403\u806f\u76df\u5e74\u5ea6\u901a\u8a0a"},"content":{"rendered":"<h2><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/Final-2022-EOY-Newsletter.pdf\"><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-20433\" style=\"font-size: 16px;\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/2022-Year-End-Newsletter-cover-791x1024.png\" alt=\"\" width=\"404\" height=\"523\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/2022-Year-End-Newsletter-cover-791x1024.png 791w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/2022-Year-End-Newsletter-cover-232x300.png 232w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/2022-Year-End-Newsletter-cover-768x994.png 768w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/2022-Year-End-Newsletter-cover-1187x1536.png 1187w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/2022-Year-End-Newsletter-cover.png 1545w\" sizes=\"(max-width: 404px) 100vw, 404px\" \/><\/a>\u8207 ECD \u793e\u5340\u5206\u4eab\u4e00\u5e74\u7684\u5e0c\u671b\uff01<\/h2>\n<p><strong><a title=\"2022 ECD \u5168\u7403\u806f\u76df\u5e74\u5ea6\u901a\u8a0a\" href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/12\/Final-2022-EOY-Newsletter.pdf\" target=\"_blank\" rel=\"noopener\">\u67e5\u770b 2022 \u5e74\u5e74\u7d42\u6642\u4e8b\u901a\u8a0a\u3002<\/a><\/strong><\/p>\n<p>\u5728\u904e\u53bb\u7684\u5169\u5e74\u88e1\uff0cECD\u806f\u76df\u901a\u904e\u66f4\u591a\u7684<strong>\u5728\u7dda\u9023\u63a5<\/strong>\u548c\u66f4\u5c0f\u7684\u5340\u57df<strong>\u6703\u8b70<\/strong>\u4f86\u9069\u61c9\u4fdd\u6301\u8ddd\u96e2\u548c\u65c5\u884c\u7981\u4ee4\u7684\u65b0\u5e38\u614b\u3002\u6211\u5011\u555f\u52d5\u4e86<strong><a href=\"mailto:Belinda.Cobb@erdheim-chester.org\">\u60a3\u8005\u5c0e\u822a<\/a>\u8a08\u5283<\/strong>\uff0c\u4ee5\u8aac\u660e\u4e00\u5c0d\u4e00\u5730\u6307\u5c0e\u60a3\u8005\u5b8c\u6210\u5c0b\u627e\u5408\u9069\u91ab\u751f\u3001\u6cbb\u7642\u6a5f\u6703\u548c\u8986\u84cb\u7bc4\u570d\u4ee5\u53ca\u540c\u4f34\u652f\u6301\u7684\u904e\u7a0b\u3002\u6211\u5011\u5c0d\u7814\u7a76\u754c\u7684\u6301\u7e8c\u652f\u63f4\u4fc3\u6210\u4e86 <strong>FDA \u6279\u51c6\u7684\u7b2c\u4e8c\u7a2e<\/strong> ECD \u85e5\u7269 cobimetinib\u3002\u66f4\u4e0d\u7528\u8aaa\uff0c\u5230\u76ee\u524d\u70ba\u6b62\uff0c\u6211\u5011\u7684\u8cc7\u52a9\u8a08\u5283\u5df2\u7d93\u70baECD\u5c08\u6848\u63d0\u4f9b\u4e86\u8fd1<strong>100\u842c\u7f8e\u5143\u7684\u7814\u7a76<\/strong>\u8cc7\u91d1\uff0c\u53e6\u5916\u9084\u6709<strong>450,000\u7f8e\u5143<\/strong>\u6b63\u5728\u7c4c\u5099\u4e2d\u3002\u570b\u969b <strong>ECD \u8b77\u7406\u4e2d\u5fc3<\/strong>\u7e7c\u7e8c\u88ab\u78ba\u5b9a\u4e26\u6dfb\u52a0\u5230\u7db2\u8def\u4e2d\uff0c\u70ba\u60a3\u8005\u63d0\u4f9b\u5c08\u5bb6\u8b77\u7406\uff0c\u4f75\u70ba\u5c0d\u75be\u75c5\u4e0d\u592a\u77ad\u89e3\u7684\u91ab\u751f\u63d0\u4f9b\u8aee\u8a62\u3002    <\/p>\n<p>\u5728\u75ab\u60c5\u671f\u9593\u66ab\u505c\u4e86\u5e74\u5ea6\u60a3\u8005\u548c\u5bb6\u5ead\u805a\u6703\u548c\u91ab\u5b78\u7814\u8a0e\u6703\u540e\uff0c\u6211\u5011\u7d42\u65bc\u80fd\u5920\u57282023\u5e744\u670827\u65e5\u81f328\u65e5\u63d0\u4f9b\u9019\u500b\u73fe\u5834\u6703\u8b70\u4e86\uff01  <a title=\"ECD \u60a3\u8005\u548c\u5bb6\u5ead\u805a\u6703\" href=\"https:\/\/www.erdheim-chester.org\/zh-hant\/ecd-%e6%82%a3%e8%80%85%e5%92%8c%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83\/\">\u5728\u6b64\u8655\u77ad\u89e3\u6709\u95dc\u6b64\u6d3b\u52d5\u7684\u66f4\u591a\u8cc7\u8a0a\u3002<\/a><\/p>\n<p>\u7576\u6211\u5011\u53cd\u601d\u793e\u5340\u6210\u54e1\u7684\u8003\u9a57\u548c\u52dd\u5229\u6642\uff0c<strong>\u6211\u5011\u8981\u611f\u8b1d\u6bcf\u5929\u70ba ECD \u60a3\u8005\u63d0\u4f9b\u652f\u63f4\u7684\u4eba\u3002<\/strong>\u60a8\u7684\u652f\u6301\u4e0d\u50c5\u95dc\u4e4e\u60a8\u7684\u89aa\u4eba\uff0c\u9084\u95dc\u4e4e\u6240\u6709\u9762\u81e8 Erdheim-Chester \u75c5\u7684\u5bb6\u5ead\u7684\u672a\u4f86\u3002\u60a8\u7684\u4f9b\u61c9\u4ee5\u5404\u7a2e\u5f62\u5f0f\u63d0\u4f9b\uff0c\u6211\u5011\u611f\u8b1d\u60a8\u6240\u505a\u7684\u4e00\u5207\uff01 <\/p>\n<p>ECD Global Alliance\uff09\u5728<strong>2022\u5e7412\u670831<\/strong>\u65e5\u4e4b\u524d\u901a\u904e\u914d\u6350\u6d3b\u52d5\uff0c\u70ba\u5384Erdheim-Chester\u75c5\u60a3\u8005\u63d0\u4f9b\u65b0\u7684\u652f\u63f4\uff01\u611f\u8b1d\u6177\u6168\u7684 ECDGA \u8463\u4e8b\u6703\u6210\u54e1\u548c\u6350\u52a9\u8005\u63d0\u4f9b\u7684 <strong>11,000 \u7f8e\u5143\u5339\u914d\u79ae\u7269<\/strong>\u2014\u2014\u60a8\u5c0d\u6211\u5011\u95dc\u9375\u5de5\u4f5c\u7684\u5f71\u97ff\u5c07\u52a0\u500d\u3002<\/p>\n<p>\u901a\u904e\u60a8\u7684\u6350\u6b3e\uff0c\u6211\u5011\u53ef\u4ee5\u70ba\u6240\u6709\u53d7 ECD\u5f71\u97ff\u7684\u4eba\u5275\u9020\u66f4\u5149\u660e\u7684\u672a\u4f86\u3002\u8acb\u4eca\u5929\u5c31\u6350\u6b3e\uff0c\u4ee5\u52a0\u5f37\u6211\u5011\u4f86\u5e74\u7684\u5de5\u4f5c&#8230;&#8230;\u4e26\u4e14\u77e5\u9053\u4f60\u6703\u505a\u96d9\u500d\u7684\u597d\u4e8b\uff01   <strong><a href=\"https:\/\/erdheim-chester.salsalabs.org\/fundecd2022\/index.html\">\u4eca\u5929\u5c31\u628a\u4f60\u7684\u79ae\u7269\u7ffb\u500d\u5427\uff01<\/a> <\/strong><\/p>\n<p>\u60a8\u7684\u79ae\u7269\u63d0\u4f9b\u4ec0\u9ebc\uff1a<\/p>\n<ul>\n<li><strong>\u7814\u7a76\u2013 <\/strong>\u8cc7\u52a9 Erdheim-Chester \u75c5\u7684\u7814\u7a76\u662f\u6211\u5011\u4f7f\u547d\u7684\u9996\u8981\u4efb\u52d9\u30022022 \u5e74 ECD \u7814\u7a76\u8cc7\u52a9\u734e\u5373\u5c07\u516c\u4f48\uff01 <\/li>\n<li><strong>\u6559\u80b2\u8207\u610f\u8b58 &#8211; <\/strong>\u91ab\u751f\u6559\u80b2\u662f\u901a\u904e\u570b\u969b\u6703\u8b70\u3001\u5728\u7dda\u7db2\u8def\u7814\u8a0e\u6703\u3001\u91ab\u5b78\u5c08\u696d\u5916\u5c55\u7b49\u5b8c\u6210\u7684\u3002<\/li>\n<li><strong>\u652f\u63f4 \u2013 <\/strong>\u80fd\u5920\u70ba\u60a3\u8005\u53ca\u5176\u5bb6\u4eba\u63d0\u4f9b\u4ed6\u5011\u70ba\u81ea\u5df1\u8faf\u8b77\u6240\u9700\u7684\u5de5\u5177\u548c\u806f\u7e6b\u662f\u975e\u5e38\u5bf6\u8cb4\u7684\u3002\u60a8\u7684\u6350\u6b3e\u4e0d\u50c5\u6709\u52a9\u65bc\u6211\u5011Rare\u793e\u5340\u7684\u7e41\u69ae\u767c\u5c55\u3002 <\/li>\n<\/ul>\n<p>\u61f7\u8457\u611f\u6fc0\u4e4b\u60c5\uff0c<\/p>\n<p><em>ECD\u806f\u76df\u5718\u968a<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u8207 ECD \u793e\u5340\u5206\u4eab\u4e00\u5e74\u7684\u5e0c\u671b\uff01 \u67e5\u770b 2022 \u5e74\u5e74\u7d42\u6642\u4e8b [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":62996,"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":[],"class_list":["post-62994","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ecdga-"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/62994","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\/8"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/comments?post=62994"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/62994\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media\/62996"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media?parent=62994"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/categories?post=62994"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/tags?post=62994"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}