{"id":53467,"date":"2025-05-07T09:20:02","date_gmt":"2025-05-07T13:20:02","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=53467"},"modified":"2025-05-12T14:25:22","modified_gmt":"2025-05-12T18:25:22","slug":"%e5%90%88%e4%bd%9c%e3%80%81%e8%81%94%e7%b3%bb%e4%b8%8e%e5%85%b1%e5%90%8c%e7%9b%ae%e6%a0%87%ef%bc%9a%e4%b8%ba%e4%bd%95ecdga%e5%8c%bb%e5%ad%a6%e7%a0%94%e8%ae%a8%e4%bc%9a%e5%a6%82%e6%ad%a4%e9%87%8d","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/collaboration-connection-and-shared-purpose-why-the-ecdga-medical-symposium-matters\/","title":{"rendered":"\u5408\u4f5c\u3001\u8054\u7ed3\u4e0e\u5171\u540c\u76ee\u6807\uff1a\u4e3a\u4f55ECDGA\u533b\u5b66\u7814\u8ba8\u4f1a\u610f\u4e49\u91cd\u5927"},"content":{"rendered":"<p>\u6bcf\u5e74\uff0c\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\uff08ECDGA\uff09\u90fd\u4f1a\u4e3e\u529e\u4e00\u573a\u522b\u5f00\u751f\u9762\u7684\u6d3b\u52a8\uff0c\u5c06\u6765\u81ea\u4e0d\u540c\u5b66\u79d1\u548c\u4e0d\u540c\u56fd\u5bb6\u7684\u533b\u751f\u3001\u7814\u7a76\u4eba\u5458\u53ca\u62a4\u7406\u4e13\u5bb6\u6c47\u805a\u4e00\u5802\u3002\u8be5 <strong>ECDGA \u533b\u5b66\u7814\u8ba8\u4f1a<\/strong> \u8fd9\u4e0d\u4ec5\u4ec5\u662f\u4e00\u6b21\u79d1\u5b66\u4f1a\u8bae\u2014\u2014\u5b83\u662f\u5168\u7403\u81f4\u529b\u4e8e\u7814\u7a76\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09\u7684\u533b\u5b66\u754c\u8fdb\u884c\u77e5\u8bc6\u4ea4\u6d41\u3001\u6218\u7565\u534f\u8c03\u548c\u5efa\u7acb\u8054\u7cfb\u7684\u6838\u5fc3\u5e73\u53f0\u3002.<\/p>\n<p>\u968f\u7740\u4e0e\u4f1a\u8005\u9f50\u805a\u4e8e <strong>2025\u5e745\u670827\u65e5\uff0c\u5df4\u585e\u7f57\u90a3<\/strong>, \uff0c\u76ee\u6807\u975e\u5e38\u660e\u786e\uff1a\u62d3\u5c55\u6211\u4eec\u7684\u8ba4\u77e5\u8fb9\u754c\uff0c\u63d0\u9ad8\u60a3\u8005\u62a4\u7406\u8d28\u91cf\uff0c\u5e76\u5efa\u7acb\u8054\u7cfb\u4ee5\u63a8\u52a8\u65b0\u7684\u7814\u7a76\u3001\u4e34\u5e8a\u8bd5\u9a8c\u548c\u6cbb\u7597\u65b9\u6848\u7684\u5f00\u5c55\u3002\u4f46\u9664\u4e86\u6570\u636e\u548c\u8bb2\u5ea7\u4e4b\u5916\uff0c\u4f7f\u672c\u6b21\u6d3b\u52a8\u81f3\u5173\u91cd\u8981\u7684\u539f\u56e0\u5728\u4e8e <strong>\u5171\u540c\u7684\u4f7f\u547d\u611f<\/strong>\u2014\u2014\u8fd9\u8868\u660e\uff0c\u5c3d\u7ba1ECD\u8f83\u4e3a\u7f55\u89c1\uff0c\u4f46\u5b83\u7406\u5e94\u50cf\u5176\u4ed6\u4efb\u4f55\u75be\u75c5\u4e00\u6837\uff0c\u5f97\u5230\u540c\u6837\u4e25\u8c28\u7684\u7814\u7a76\u548c\u521b\u65b0\u3002.<\/p>\n<h3>\u672c\u6b21\u6d3b\u52a8\u4e3a\u4f55\u72ec\u5177\u7279\u8272<\/h3>\n<p>\u672c\u6b21\u7814\u8ba8\u4f1a\u662f <strong>\u4ec5\u9650\u4e13\u95e8\u7684\u5168\u7403\u4f1a\u8bae<\/strong> \u4e13\u4e3a\u4e13\u6ce8\u4e8e\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09\u7684\u533b\u7597\u4e13\u4e1a\u4eba\u5458\u800c\u8bbe\u3002\u8be5\u8bfe\u7a0b\u5728\u7ed3\u6784\u4e0a\u72ec\u5177\u7279\u8272\uff0c\u5176\u8bbe\u8ba1\u5e76\u975e\u57fa\u4e8e\u4e00\u822c\u7684\u80bf\u7624\u5b66\u6216\u514d\u75ab\u5b66\u539f\u7406\uff0c\u800c\u662f\u56f4\u7ed5\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09\u79d1\u5b66\u7814\u7a76\u4e0e\u4e34\u5e8a\u62a4\u7406\u4e2d\u51fa\u73b0\u7684\u975e\u5e38\u5177\u4f53\u7684\u6311\u6218\u548c\u65b0\u53d1\u73b0\u5c55\u5f00\u3002.<\/p>\n<p>\u5728\u8fd9\u91cc\uff0c\u6765\u81ea\u8840\u6db2\u5b66\u3001\u80bf\u7624\u5b66\u3001\u75c5\u7406\u5b66\u3001\u795e\u7ecf\u5b66\u3001\u514d\u75ab\u5b66\u3001\u653e\u5c04\u5b66\u3001\u80be\u810f\u75c5\u5b66\u548c\u5185\u79d1\u9886\u57df\u7684\u4e13\u5bb6\u4eec\u5728\u5e73\u7b49\u7684\u57fa\u7840\u4e0a\u9f50\u805a\u4e00\u5802\uff0c\u65e8\u5728\uff1a<\/p>\n<ul>\n<li>\u5206\u4eab <strong>\u4e34\u5e8a\u75c5\u4f8b\u7814\u7a76<\/strong> \u8fd9\u53ef\u80fd\u4f1a\u91cd\u65b0\u5b9a\u4e49\u8bca\u65ad\u601d\u8def<\/li>\n<li>\u68c0\u67e5 <strong>\u5206\u5b50\u9776\u70b9<\/strong>, \uff0c\u4f8b\u5982BRAF V600E\u7a81\u53d8\u53ca\u5176\u4ed6MAPK\u901a\u8def\u7a81\u53d8\uff0c\u8fd9\u4e9b\u7a81\u53d8\u662f\u5f53\u524d\u53ca\u65b0\u5174\u7597\u6cd5\u7684\u57fa\u7840<\/li>\n<li>\u63a2\u7d22 <strong>\u73b0\u5b9e\u4e2d\u7684\u533b\u7597\u62a4\u7406\u6311\u6218<\/strong>, \uff0c\u7279\u522b\u662f\u5728\u51fa\u73b0\u7279\u5b9a\u5668\u5b98\u53d7\u7d2f\u6216\u590d\u6742\u5408\u5e76\u75c7\u7684\u60c5\u51b5\u4e0b<\/li>\n<li>\u4e3a\u2026\u2026\u7684\u53d1\u5c55\u505a\u51fa\u8d21\u732e <strong>\u4e34\u5e8a\u5b9e\u8df5\u6807\u51c6<\/strong> \u53ef\u5728\u5404\u673a\u6784\u4e2d\u91c7\u7528\u7684<\/li>\n<\/ul>\n<p>\u6bcf\u6b21\u8bfe\u7a0b\u90fd\u57fa\u4e8e\u8fd9\u6837\u7684\u4fe1\u5ff5\uff0c\u5373 <strong>\u8de8\u5b66\u79d1\u5408\u4f5c\u662f\u552f\u4e00\u7684\u524d\u8fdb\u4e4b\u8def<\/strong> \u5728\u7f55\u89c1\u75c5\u836f\u7269\u9886\u57df\u3002.<\/p>\n<h3>\u6784\u5efa\u5168\u7403\u4e13\u5bb6\u7f51\u7edc<\/h3>\n<p>\u4e0e\u5176\u4ed6\u764c\u75c7\u6216\u514d\u75ab\u5b66\u9886\u57df\u76f8\u6bd4\uff0cECD\u533b\u5b66\u754c\u76ee\u524d\u89c4\u6a21\u4ecd\u7136\u8f83\u5c0f\u3002\u4f46\u5b83 <strong>\u4eba\u8109\u5e7f\u6cdb\u3001\u4e13\u6ce8\u6295\u5165\u3001\u5f71\u54cd\u529b\u65e5\u76ca\u589e\u5f3a<\/strong>. \u672c\u6b21\u7814\u8ba8\u4f1a\u6709\u52a9\u4e8e\u5de9\u56fa\u8fd9\u4e00\u7f51\u7edc\uff0c\u4e3a\u4e0e\u4f1a\u8005\u63d0\u4f9b\u4e86\u4e00\u4e2a\u96be\u5f97\u7684\u673a\u4f1a\uff0c\u8ba9\u4ed6\u4eec\u80fd\u591f\uff1a<\/p>\n<ul>\n<li>\u6765\u8ba4\u8bc6\u4e00\u4e0b <strong>ECD \u4fdd\u80b2\u4e2d\u5fc3<\/strong> \u4e16\u754c\u5404\u5730<\/li>\n<li>\u53d1\u6398\u2026\u2026\u7684\u673a\u4f1a <strong>\u7814\u7a76\u5408\u4f5c\u4f19\u4f34\u5173\u7cfb<\/strong> \u548c <strong>\u53c2\u4e0e\u4e34\u5e8a\u8bd5\u9a8c<\/strong><\/li>\n<li>\u63a2\u7d22\u5b9e\u73b0\u2026\u2026\u7684\u9014\u5f84 <strong>\u5171\u540c\u7f72\u540d\u3001\u79d1\u7814\u7ecf\u8d39\u5408\u4f5c<\/strong>, \uff0c\u4ee5\u53ca <strong>\u6570\u636e\u5171\u4eab<\/strong><\/li>\n<li>\u5efa\u7acb\u590d\u6742\u75c5\u4f8b\u7684\u8f6c\u8bca\u673a\u5236<\/li>\n<\/ul>\n<p>\u8bb8\u591a\u63a8\u52a8ECD\u62a4\u7406\u53d1\u5c55\u7684\u7a81\u7834\u6027\u6210\u679c\u2014\u2014\u4ece\u9776\u5411\u6cbb\u7597\u5230\u56fd\u9645\u60a3\u8005\u767b\u8bb0\u7cfb\u7edf\u2014\u2014\u6700\u521d\u90fd\u662f\u5728\u50cf\u8fd9\u6837\u7684\u4e00\u6b21\u6b21\u4f1a\u8bae\u4e0a\u6784\u60f3\u51fa\u6765\u7684\u3002.<\/p>\n<h3>\u53c2\u4e0e\u4e3a\u4f55\u91cd\u8981<\/h3>\n<p>\u65e0\u8bba\u60a8\u662f\u9996\u6b21\u53c2\u4f1a\uff0c\u8fd8\u662fECDGA\u533b\u5b66\u987e\u95ee\u59d4\u5458\u4f1a\u7684\u8d44\u6df1\u6210\u5458\uff0c\u60a8\u51fa\u5e2d\u533b\u5b66\u7814\u8ba8\u4f1a\u4e0d\u4ec5\u4f53\u73b0\u4e86\u5174\u8da3\uff0c\u66f4\u5f70\u663e\u4e86\u60a8\u7684\u627f\u8bfa\u3002 \u8fd9\u79cd\u627f\u8bfa\u610f\u5473\u7740\u8981\u7a81\u7834\u7f55\u89c1\u75c5\u5e26\u6765\u7684\u969c\u788d\uff0c\u5728\u7279\u5b9a\u9886\u57df\u5e94\u7528\u524d\u6cbf\u79d1\u5b66\uff0c\u5e76\u6784\u5efa\u4e00\u4e2a\u751f\u6001\u7cfb\u7edf\uff0c\u8ba9\u4efb\u4f55\u60a3\u8005\u7684\u75c5\u4f8b\u2014\u2014\u65e0\u8bba\u591a\u4e48\u7279\u6b8a\u2014\u2014\u90fd\u80fd\u88ab\u7406\u89e3\u3002.<\/p>\n<p>\u65e9\u4ea7\u513f\u8111\u75c5\uff08ECD\uff09\u867d\u5c5e\u7f55\u89c1\uff0c\u4f46\u7edd\u975e\u65e0\u8ff9\u53ef\u5bfb\u3002\u5f97\u76ca\u4e8e\u50cf\u60a8\u8fd9\u6837\u7684\u4e34\u5e8a\u533b\u751f\u548c\u7814\u7a76\u4eba\u5458\u65e5\u76ca\u6269\u5927\u7684\u7f51\u7edc\uff0c\u6211\u4eec\u6b63\u5c06\u590d\u6742\u6027\u8f6c\u5316\u4e3a\u6e05\u6670\u2014\u2014\u5c06\u5e0c\u671b\u8f6c\u5316\u4e3a\u884c\u52a8\u3002.<\/p>\n<h3>\u52a0\u5165\u6b63\u5728\u8fdb\u884c\u7684\u8ba8\u8bba<\/h3>\n<p>\u672c\u6b21\u7814\u8ba8\u4f1a\u4ec5\u4ec5\u662f\u4e2a\u5f00\u59cb\u3002\u6211\u4eec\u9f13\u52b1\u4e0e\u4f1a\u8005\u901a\u8fc7\u4ee5\u4e0b\u65b9\u5f0f\u5168\u5e74\u6301\u7eed\u53c2\u4e0eECDGA\u7684\u6d3b\u52a8\uff1a<\/p>\n<ul>\n<li>\u53c2\u52a0 <strong>ECD \u60a3\u8005\u767b\u8bb0\u7cfb\u7edf\u548c\u6570\u636e\u5e73\u53f0<\/strong><\/li>\n<li>\u53c2\u4e0e <strong>\u4e34\u5e8a\u6307\u5357\u5236\u5b9a<\/strong><\/li>\n<li>\u4e3a\u672a\u6765\u4f1a\u8bae\u63d0\u4ea4\u6458\u8981\u3001\u75c5\u4f8b\u62a5\u544a\u6216\u7814\u7a76\u63d0\u6848<\/li>\n<li>\u4e3a\u2026\u2026\u505a\u51fa\u8d21\u732e <strong>\u591a\u8bed\u8a00\u8d44\u6e90\u5e93<\/strong> \u6b63\u5728\u4e3a\u5168\u7403\u62a4\u7406\u56e2\u961f\u5f00\u53d1<\/li>\n<\/ul>\n<p>\u6211\u4eec\u5171\u540c\u5b9a\u4e49\u7684\uff0c\u4e0d\u4ec5\u662fECD\u7684\u6cbb\u7597\u65b9\u5f0f\uff0c\u66f4\u662f\u7f55\u89c1\u75c5\u5408\u4f5c\u7684\u65b9\u5f0f\u3002.<\/p>\n<p>\u6211\u8c28\u4ee3\u8868ECDGA\u8463\u4e8b\u4f1a\u4ee5\u53ca\u6211\u4eec\u7684\u5168\u7403\u60a3\u8005\u7fa4\u4f53\uff0c\u611f\u8c22\u60a8\u53c2\u4e0e\u8fd9\u9879\u5de5\u4f5c\u3002\u6211\u4eec\u671f\u5f85\u5728\u5df4\u585e\u7f57\u90a3\u53ca\u4eca\u540e\u7684\u65c5\u7a0b\u4e2d\uff0c\u7ee7\u7eed\u4e0e\u60a8\u643a\u624b\u540c\u884c\u3002.<\/p>","protected":false},"excerpt":{"rendered":"<p>Each year, the Erdheim-Chester Disease Global Alliance (ECDGA) hosts a singular event that brings together physicians, researchers, and care specialists from across disciplines and across borders. The ECDGA Medical Symposium [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":53475,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":51,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[594,375,378,387,380,383,374,384,386,376,385],"class_list":["post-53467","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-barcelona","tag-ecdawareness","tag-ecdcommunity","tag-ecdga","tag-ecdsupport","tag-ecdvolunteer","tag-erdheimchesterdisease","tag-hopeforecd","tag-makerarevisible","tag-raredisease","tag-supportraredisease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/53467","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=53467"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/53467\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/53475"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=53467"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=53467"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=53467"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}