{"id":48251,"date":"2025-04-29T05:17:25","date_gmt":"2025-04-29T09:17:25","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=48251"},"modified":"2025-08-23T17:13:11","modified_gmt":"2025-08-23T21:13:11","slug":"ecdga%e5%ba%86%e7%a5%9d%e6%99%9a%e5%ae%b4%e4%b8%8a%e5%b0%86%e6%9c%89%e5%93%aa%e4%ba%9b%e6%b4%bb%e5%8a%a8","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/what-to-expect-at-the-ecdga-celebration-dinner\/","title":{"rendered":"ECDGA\u5e86\u529f\u665a\u5bb4\u5c06\u6709\u54ea\u4e9b\u7cbe\u5f69\u5185\u5bb9"},"content":{"rendered":"<p>\u5728\u2026\u2026\u5ea6\u8fc7\u4e86\u4e00\u5929\uff0c\u8fd9\u4e00\u5929\u5145\u6ee1\u4e86\u77e5\u8bc6\u3001\u5206\u4eab\u7684\u6545\u4e8b\u548c\u5bcc\u6709\u542f\u53d1\u6027\u7684\u5bf9\u8bdd\uff0c\u00a0<strong>2025\u5e74\u60a3\u8005\u53ca\u5bb6\u5c5e\u8054\u8c0a\u4f1a<\/strong>, the ECD Global Alliance invites all attendees to join us for a heartfelt and memorable\u00a0<strong>\u5e86\u795d\u665a\u5bb4<\/strong>\u2014\u2014\u8fd9\u662f\u4e00\u4e2a\u505c\u4e0b\u811a\u6b65\u3001\u53cd\u601d\u5e76\u5411\u8ba9\u8fd9\u6bb5\u65c5\u7a0b\u5145\u6ee1\u5e0c\u671b\u7684\u793e\u533a\u81f4\u656c\u7684\u65f6\u523b\u3002.<\/p>\n<p>\u4e8e\u2026\u2026\u5f53\u665a\u4e3e\u884c\u00a0<strong>5\u670826\u65e5<\/strong>\u00a0\u5728\u90a3\u7f8e\u4e3d\u7684\u00a0<strong>\u5df4\u585e\u7f57\u90a3\u83f2\u62c9\u6587\u827a\u590d\u5174\u9152\u5e97<\/strong>, \uff0c\u8fd9\u6b21\u7279\u522b\u7684\u805a\u4f1a\u4e0d\u4ec5\u4ec5\u662f\u4e00\u987f\u996d\u3002\u8fd9\u662f\u5e86\u795d\u5168\u7403\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u793e\u533a\u7684\u575a\u97e7\u4e0e\u97e7\u6027\u7684\u673a\u4f1a\uff0c\u4e5f\u662f\u52a0\u6df1\u5f7c\u6b64\u8054\u7cfb\u3001\u9759\u4e0b\u5fc3\u6765\u5171\u5ea6\u7f8e\u597d\u65f6\u5149\u7684\u5951\u673a\u2014\u2014\u6ca1\u6709\u8bf4\u6559\uff0c\u53ea\u6709\u771f\u631a\u7684\u4ea4\u6d41\u3002.<\/p>\n<h3>\u4e00\u573a\u690d\u6839\u4e8e\u4f7f\u547d\u7684\u5e86\u5178<\/h3>\n<p>\u201c\u60a3\u8005\u4e0e\u5bb6\u5c5e\u805a\u4f1a\u201d\u5145\u6ee1\u4e86\u5b66\u4e60\u4e0e\u63a2\u7d22\u7684\u65f6\u523b\u2014\u2014\u4f46\u201c\u5e86\u795d\u665a\u5bb4\u201d\u624d\u662f\u00a0<strong>\u5fc3\u4e0e\u5fc3\u7684\u76f8\u9047<\/strong>. \u8fd9\u573a\u665a\u5bb4\u65e8\u5728\u8868\u5f70\u90a3\u4e9b\u4e0e\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u60a3\u8005\u5171\u540c\u751f\u6d3b\u6216\u7167\u6599\u60a3\u8005\u6240\u5c55\u73b0\u51fa\u7684\u52c7\u6c14\u3002\u8fd9\u4e5f\u662f\u5411\u90a3\u4e9b\u4e0d\u65ad\u63a8\u52a8\u8be5\u9886\u57df\u53d1\u5c55\u2014\u2014\u5e76\u76f8\u4e92\u6fc0\u52b1\u2014\u2014\u7684\u7814\u7a76\u4eba\u5458\u3001\u62a4\u7406\u4eba\u5458\u548c\u60a3\u8005\u4eec\u4e3e\u676f\u81f4\u656c\u7684\u65f6\u523b\u3002.<\/p>\n<p>\u60a8\u5c06\u611f\u53d7\u5230\u4e00\u79cd\u6e29\u99a8\u800c\u70ed\u60c5\u7684\u6c1b\u56f4\uff0c\u8fd9\u79cd\u6c1b\u56f4\u65e8\u5728\u5475\u62a4\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u5386\u7a0b\u4e2d\u7684\u60c5\u611f\u5c42\u9762\u3002\u65e0\u8bba\u60a8\u662f\u521d\u6b21\u53c2\u52a0\uff0c\u8fd8\u662f\u4e0e\u8001\u670b\u53cb\u91cd\u9022\uff0c\u8fd9\u573a\u665a\u5bb4\u90fd\u5c06\u4e3a\u6bcf\u4e2a\u4eba\u521b\u9020\u4e00\u4e2a\u7a7a\u95f4\uff0c\u8ba9\u5927\u5bb6\u611f\u5230\u88ab\u5173\u6ce8\u3001\u88ab\u91cd\u89c6\u5e76\u5f97\u5230\u652f\u6301\u3002.<\/p>\n<h3 role=\"heading\">\u5f53\u665a\u7684\u6d3b\u52a8\u5185\u5bb9\u5305\u62ec<\/h3>\n<ul>\n<li><strong>\u4e00\u4e2a\u8f7b\u677e\u3001\u6e29\u99a8\u7684\u73af\u5883<\/strong>\u00a0\u2013 \u665a\u5bb4\u5c06\u5728\u4e00\u4e2a\u8212\u9002\u7684\u573a\u6240\u4e3e\u884c\uff0c\u8fd9\u91cc\u65e2\u9002\u5408\u8f7b\u677e\u4ea4\u8c08\uff0c\u4e5f\u80fd\u4fc3\u8fdb\u6709\u610f\u4e49\u7684\u4ea4\u6d41\u3002\u65e0\u9700\u6b63\u5f0f\u7740\u88c5\u2014\u2014\u8bf7\u4ee5\u6700\u81ea\u7136\u7684\u59ff\u6001\u524d\u6765\u5373\u53ef\u3002.<\/li>\n<li><strong>\u611f\u8a00\u4e0e\u81f4\u656c<\/strong>\u00a0\u2013 \u5728\u5f53\u665a\u7684\u6d3b\u52a8\u4e2d\uff0c\u53ef\u80fd\u4f1a\u5b89\u6392\u77ed\u6682\u7684\u73af\u8282\uff0c\u4ee5\u7eaa\u5ff5\u8fd9\u6bb5\u5386\u7a0b\uff0c\u7f05\u6000\u5df2\u6545\u7684\u540c\u4ec1\uff0c\u5e76\u5e86\u795d\u793e\u533a\u5171\u540c\u53d6\u5f97\u7684\u8fdb\u6b65\u3002.<\/li>\n<li><strong>\u4e0d\u5e26\u4efb\u4f55\u76ee\u7684\u7684\u8054\u7ed3<\/strong>\u00a0\u2013 \u665a\u5bb4\u7684\u91cd\u70b9\u5728\u4e8e\u4eba\uff0c\u800c\u975e\u6f14\u8bb2\u3002\u8fd9\u662f\u4e00\u4e2a\u8ba9\u4eba\u6df1\u547c\u5438\u3001\u4eab\u7528\u7f8e\u98df\u3001\u5e76\u5728\u6ca1\u6709\u538b\u529b\u548c\u62d8\u675f\u7684\u60c5\u51b5\u4e0b\u8f7b\u677e\u4ea4\u6d41\u7684\u7a7a\u95f4\u3002.<\/li>\n<li><strong>\u5e86\u795d\u5c0f\u5c0f\u7684\u80dc\u5229<\/strong>\u00a0\u2013 Living with ECD means embracing moments of joy wherever they come. The dinner is a reminder that, even in the midst of a difficult diagnosis,\u00a0<strong>\u8fd8\u6709\u90a3\u4e48\u591a\u503c\u5f97\u5e86\u795d\u7684\u4e8b\u60c5<\/strong>.<\/li>\n<\/ul>\n<h3>\u4e3a\u4ec0\u4e48\u8fd9\u4e00\u665a\u5982\u6b64\u91cd\u8981<\/h3>\n<p>ECDGA\u5e86\u795d\u665a\u5bb4\u4e0d\u4ec5\u4ec5\u662f\u4e00\u573a\u793e\u4ea4\u6d3b\u52a8\u2014\u2014\u5b83\u662f\u4e00\u9879\u5bcc\u6709\u6df1\u610f\u7684\u4f20\u7edf\uff0c\u5f70\u663e\u4e86\u672c\u7ec4\u7ec7\u7684\u6838\u5fc3\u7cbe\u795e\uff1a\u00a0<strong>\u793e\u533a\u3001\u540c\u60c5\u5fc3\u4e0e\u8054\u7ed3<\/strong>. \u968f\u7740\u4e00\u5929\u7684\u7ed3\u675f\uff0c\u4eca\u665a\u7684\u6d3b\u52a8\u4e3a\u8fd9\u4e2a\u6c89\u91cd\u7684\u8bae\u9898\u589e\u6dfb\u4e86\u4e00\u4e1d\u8f7b\u677e\u6c1b\u56f4\uff0c\u8ba9\u4e0e\u4f1a\u8005\u80fd\u591f\u5c06\u5f53\u5929\u7684\u7075\u611f\u8f6c\u5316\u4e3a\u6301\u4e45\u7684\u4eba\u9645\u5173\u7cfb\u3002.<\/p>\n<p>\u65e0\u8bba\u4f60\u662f\u7ed3\u4ea4\u4e86\u65b0\u670b\u53cb\u3001\u83b7\u5f97\u4e86\u65b0\u89c1\u89e3\uff0c\u8fd8\u662f\u53ea\u662f\u60f3\u548c\u4e00\u4e2a\u61c2\u4f60\u7684\u4eba\u9759\u9759\u5730\u5206\u4eab\u4e00\u4e2a\u5fae\u7b11\uff0c\u5728\u8fd9\u5f20\u684c\u5b50\u65c1\uff0c\u603b\u6709\u4e00\u5e2d\u4e4b\u5730\u7b49\u7740\u4f60\u3002.<\/p>\n<h3>\u6b22\u8fce\u52a0\u5165\u6211\u4eec\u5728\u5df4\u585e\u7f57\u90a3\u7684\u6d3b\u52a8<\/h3>\n<p>\u8be5\u00a0<a href=\"\/zh\/%e6%97%a9%e4%ba%a7%e5%84%bf%e6%82%a3%e8%80%85%e5%ae%b6%e5%b1%9e%e8%81%9a%e4%bc%9a\/\" aria-label=\"ECD\u5168\u7403\u8054\u76df2025\u5e74\u60a3\u8005\u53ca\u5bb6\u5c5e\u8054\u8c0a\u4f1a\"><strong>ECD\u5168\u7403\u8054\u76df2025\u5e74\u60a3\u8005\u53ca\u5bb6\u5c5e\u8054\u8c0a\u4f1a<\/strong><\/a>\u00a0\u5c06\u4e8e\u00a0<strong>5\u670826\u65e5<\/strong>\u00a0at the Bellvitge University Hospital. This event brings together patients, family members, carers, clinicians, researchers, and members of support organizations to share knowledge and experiences related to ECD diagnosis, treatment, and daily living. The Celebration Dinner will follow the day\u2019s sessions, offering time to wind down, connect, and celebrate the power of unity.<\/p>\n<p>\u6211\u4eec\u671f\u5f85\u4e0e\u60a8\u5171\u5ea6\u8fd9\u4e2a\u96be\u5fd8\u7684\u591c\u665a\u3002.\u00a0<a href=\"\/zh\/%e6%97%a9%e4%ba%a7%e5%84%bf%e6%82%a3%e8%80%85%e5%ae%b6%e5%b1%9e%e8%81%9a%e4%bc%9a\/\" aria-label=\"\u4e86\u89e3\u6709\u5173\u5df4\u585e\u7f57\u90a3\u4f1a\u8bae\u7684\u66f4\u591a\u4fe1\u606f\u3002.\">\u4e86\u89e3\u6709\u5173\u5df4\u585e\u7f57\u90a3\u4f1a\u8bae\u7684\u66f4\u591a\u4fe1\u606f\u3002.<\/a><\/p>\n<p><em>\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\uff08ECDGA\uff09\u4e0d\u63d0\u4f9b\u533b\u7597\u5efa\u8bae\u3001\u8bca\u65ad\u6216\u6cbb\u7597\u3002\u6240\u6709\u5185\u5bb9\u4ec5\u4f9b\u53c2\u8003\u3002\u5982\u6709\u533b\u7597\u95ee\u9898\uff0c\u8bf7\u54a8\u8be2\u533b\u7597\u4fdd\u5065\u4e13\u4e1a\u4eba\u5458\u3002.<\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>After a day filled with knowledge, shared stories, and powerful conversations at the\u00a02025 Patient &amp; Family Gathering, the ECD Global Alliance invites all attendees to join us for a heartfelt [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":48252,"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":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[],"class_list":["post-48251","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/48251","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=48251"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/48251\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/48252"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=48251"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=48251"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=48251"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}