{"id":54922,"date":"2025-04-29T05:30:52","date_gmt":"2025-04-29T09:30:52","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/%e6%88%91%e5%80%91%e7%a4%be%e5%8d%80%e7%9a%84%e5%bf%83%e8%b7%b3%ef%bc%9a%e5%bf%97%e9%a1%98%e8%81%8a%e5%a4%a9%e7%ae%a1%e7%90%86%e5%93%a1\/"},"modified":"2025-08-23T17:28:51","modified_gmt":"2025-08-23T21:28:51","slug":"%e6%88%91%e5%80%91%e7%a4%be%e5%8d%80%e7%9a%84%e5%bf%83%e8%b7%b3%ef%bc%9a%e5%bf%97%e9%a1%98%e8%81%8a%e5%a4%a9%e7%ae%a1%e7%90%86%e5%93%a1","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh-hant\/%e6%88%91%e5%80%91%e7%a4%be%e5%8d%80%e7%9a%84%e5%bf%83%e8%b7%b3%ef%bc%9a%e5%bf%97%e9%a1%98%e8%81%8a%e5%a4%a9%e7%ae%a1%e7%90%86%e5%93%a1\/","title":{"rendered":"\u6211\u5011\u793e\u5340\u7684\u5fc3\u8df3\uff1a\u5fd7\u9858\u804a\u5929\u7ba1\u7406\u54e1"},"content":{"rendered":"

\u7576\u4eba\u5011\u7b2c\u4e00\u6b21\u807d\u5230 Erdheim-Chester \u75c5<\/em> \uff08ECD \u9019\u500b\u8a5e\u6642\uff0c\u611f\u89ba\u5c31\u50cf\u8e0f\u5165\u4e86\u964c\u751f\u7684\u9818\u57df\u2014\u2014\u9019\u662f\u5927\u591a\u6578\u4eba\u5f9e\u672a\u9047\u5230\u904e\u7684\u6975\u5176\u7f55\u898b\u7684\u8a3a\u65b7\u3002\u4f46\u5f9e\u4e00\u958b\u59cb\uff0cECD \u793e\u5340\u5c31\u660e\u78ba\u6307\u51fa\uff1a\u60a8\u4e26\u4e0d\u5b64\u55ae\u3002 <\/p>\n

\u5728\u60a3\u8005\u3001\u8b77\u7406\u4eba\u54e1\u548c\u60b2\u75db\u7684\u5bb6\u5ead\u6210\u54e1\u805a\u96c6\u5728\u4e00\u8d77\u7684\u6578\u5b57\u7a7a\u9593\u80cc\u5f8c\uff0c\u662f\u8b93\u9019\u4e00\u5207\u6210\u70ba\u53ef\u80fd\u7684\u5b89\u975c\u82f1\u96c4 – \u6211\u5011\u7684 \u5fd7\u9858\u804a\u5929\u4e3b\u6301\u4eba<\/strong>\u3002\u9019\u4e9b\u5bcc\u6709\u540c\u60c5\u5fc3\u7684\u4eba\u4ed8\u51fa\u4e86\u4ed6\u5011\u7684\u6642\u9593\u3001\u5fc3\u8840\u548c\u7d93\u9a57\uff0c\u5728\u5168\u7403\u7bc4\u570d\u5167\u71df\u9020\u5b89\u5168\u3001\u652f\u63f4\u6027\u7684\u74b0\u5883\u3002\u5728\u6211\u5011\u7d00\u5ff5\u4eca\u5e74 4 \u6708\u7684 \u5fd7\u9858\u8005\u6708<\/strong> \u4e4b\u969b\uff0c\u6211\u5011\u95dc\u6ce8\u90a3\u4e9b\u5e6b\u52a9\u6211\u5011\u7684\u793e\u5340\u611f\u5230\u806f\u7e6b\u3001\u77ad\u89e3\u548c\u88ab\u63a5\u7d0d\u7684\u7248\u4e3b\u3002 <\/p>\n

\u5728\u4e16\u754c\u5404\u5730\u5efa\u7acb\u5b89\u5168\u7a7a\u9593<\/h3>\n

\u6bcf\u500b\u6708\uff0c ECDGA \u90fd\u6703\u70ba\u793e\u5340\u7684\u4e0d\u540c\u968e\u5c64\u8209\u8fa6\u5404\u7a2e\u865b\u64ec\u804a\u5929\u6d3b\u52d5\uff0c\u5305\u62ec\u8b77\u7406\u4eba\u54e1\u3001\u60a3\u8005\u3001\u60b2\u75db\u4e2d\u7684\u4eba\uff0c\u751a\u81f3\u662f\u4ee5\u4e0d\u540c\u8a9e\u8a00\u8209\u884c\u7684\u7279\u5b9a\u570b\u5bb6\/\u5730\u5340\u7684\u5c0f\u7d44\u3002\u9019\u4e9b\u804a\u5929\u4e0d\u50c5\u50c5\u662f\u4f8b\u884c\u7684 Zoom \u901a\u8a71;\u5b83\u5011\u662f\u8a31\u591a\u4eba\u7684\u751f\u547d\u7dda\u3002 <\/p>\n

\u6211\u5011\u7684\u5fd7\u9858\u8005\u63d0\u4f9b\u7684\u4e0d\u50c5\u50c5\u662f\u6642\u9593\u2014\u2014\u4ed6\u5011\u63d0\u4f9b\u7406\u89e3<\/strong>\u3001\u540c\u7406\u5fc3<\/strong>\u548c\u50be\u807d<\/em>\u3002\u7121\u8ad6\u60a8\u662f\u5fb7\u570b\u7684\u65b0\u8a3a\u65b7\u60a3\u8005\uff0c\u9084\u662f\u52a0\u62ff\u5927\u7684\u8b77\u7406\u4eba\u54e1\uff0c\u90fd\u5728\u61c9\u5c0d\u7f55\u898b\u75c5\u8b77\u7406\u7684\u60c5\u611f\u640d\u5931\uff0c\u90fd\u6709\u4e00\u500b\u7a7a\u9593\u53ef\u4ee5\u807d\u5230\u60a8\u7684\u8072\u97f3\uff0c\u4e26\u4e14\u6709\u4eba\u53ef\u4ee5\u5f15\u5c0e\u5c0d\u8a71\u3002<\/strong> <\/p>\n

\u9019\u4e9b\u7a7a\u9593\u7531\u771f\u6b63\u7684\u5168\u7403\u5718\u968a\u7cbe\u5fc3\u7ba1\u7406\uff1a<\/p>\n

    \n
  • \u770b\u8b77\u4eba\u804a\u5929\uff1a<\/strong> David Long\u3001Edward Shirley \u91ab\u5b78\u535a\u58eb\u3001Doug Boone\u3001Julie Jones<\/li>\n
  • \u60b2\u50b7\u804a\u5929\uff1a<\/strong> \u5927\u885b\u00b7\u6717<\/li>\n
  • \u6cd5\u8a9e\u804a\u5929\uff1a<\/strong> \u5e15\u65af\u5361\u723e\u00b7\u57c3\u840a\u5967\u8afe\u723e\u00b7\u9b91\u5167<\/li>\n
  • \u897f\u73ed\u7259\u8a9e\u804a\u5929\uff1a<\/strong> \u5b89\u5a1c\u00b7\u74e6\u723e\u8fea\u8332\u3001\u4f0a\u840a\u6069\u00b7\u6851\u5207\u65af<\/li>\n
  • \u5fb7\u8a9e\u804a\u5929\uff1a<\/strong> \u8482\u83ab\u00b7\u65af\u5716\u723e\u74e6\u723e\u5fb7<\/li>\n
  • \u7fa9\u5927\u5229\u8a9e\u804a\u5929\uff1a<\/strong> \u746a\u9e97\u5b89\u5409\u62c9\u00b7\u6885\u5229\u8afe<\/li>\n
  • \u52a0\u62ff\u5927\u804a\u5929\uff1a<\/strong> \u4f0a\u8fea\u7d72\u00b7\u6c83\u7279\u65af<\/li>\n
  • \u6fb3\u5927\u5229\u4e9e\/\u7d10\u897f\u862d\u804a\u5929\uff1a<\/strong> \u838e\u62c9\u00b7\u7562\u66c9\u666e\u3001\u65af\u8482\u82ac\u00b7\u83ab\u88e1\u65af<\/li>\n<\/ul>\n

    \u9019\u500b\u570b\u969b\u9663\u5bb9\u4e0d\u50c5\u53cd\u6620\u4e86 ECDGA \u793e\u5340\u7684\u5f71\u97ff\u529b\uff0c\u9084\u53cd\u6620\u4e86\u5176\u591a\u6a23\u6027\u548c\u5c0d\u5305\u5bb9\u6027\u7684\u627f\u8afe\u3002<\/p>\n

    \u77ad\u89e3\u65c5\u7a0b\u7684\u5fd7\u9858\u8005<\/h3>\n

    \u9019\u4e9b\u7248\u4e3b\u7684\u8207\u773e\u4e0d\u540c\u4e4b\u8655\u4e0d\u50c5\u50c5\u662f\u4ed6\u5011\u7684\u5949\u737b\u7cbe\u795e\uff0c\u800c\u662f\u4ed6\u5011\u7684 \u751f\u6d3b\u7d93\u6b77<\/strong>\u3002\u8a31\u591a\u4eba\u672c\u8eab\u5c31\u662f\u8b77\u7406\u4eba\u54e1\u3002\u6709\u4e9b\u4eba\u662f\u4ee5\u500b\u4eba\u65b9\u5f0f\u63a5\u89f8 ECD \u7684\u91ab\u7642\u5c08\u696d\u4eba\u54e1\u3002\u5176\u4ed6\u4eba\u5df2\u7d93\u8d70\u904e\u4e86\u5931\u53bb\u7684\u968e\u6bb5\uff0c\u73fe\u5728\u70ba\u5176\u4ed6\u505a\u540c\u6a23\u4e8b\u60c5\u7684\u4eba\u63d0\u4f9b\u5bcc\u6709\u540c\u60c5\u5fc3\u7684\u5b58\u5728\u3002 <\/p>\n

    \u6bcf\u500b\u4eba\u90fd\u70ba\u804a\u5929\u5ba4\u5e36\u4f86\u4e86\u4ed6\u5011\u7368\u7279\u7684\u8996\u89d2\uff0c\u5c07\u5176\u8b8a\u6210\u4e86\u4e00\u500b\u4fe1\u4efb\u5708\u3002\u4ed6\u5011\u5f15\u5c0e\u56f0\u96e3\u7684\u5c0d\u8a71\uff0c\u6176\u795d\u5c0f\u52dd\u5229\uff0c\u4e26\u63d0\u9192\u53c3\u8207\u8005\u4ed6\u5011\u7684\u611f\u53d7\u662f\u6709\u6548\u7684\u3002\u4ed6\u5011\u662f\u6bcf\u6b21\u6703\u8b70\u80cc\u5f8c\u7684\u5fc3\u8df3 – \u9019\u4e5f\u662f\u9019\u4e9b\u6703\u8b70\u4e0d\u50c5\u63d0\u4f9b\u8cc7\u8a0a\u800c\u4e14\u5177\u6709\u8b8a\u9769\u6027\u7684\u539f\u56e0\u3002 <\/p>\n

    \u5e55\u5f8c\uff0c\u771f\u6b63\u7684\u5f71\u97ff<\/h3>\n

    \u5728\u4e00\u500b\u7531\u91ab\u7642\u9810\u7d04\u3001\u5be6\u9a57\u5ba4\u7d50\u679c\u548c\u65b0\u8208\u6cbb\u7642\u65b9\u6cd5\u4e3b\u5c0e\u7684\u4e16\u754c\u4e2d\uff0c\u4eba\u5011\u5f88\u5bb9\u6613\u5ffd\u8996\u9ede\u5c0d\u9ede\u652f\u63f4\u7684\u529b\u91cf\u3002\u4f46\u60c5\u7dd2\u548c\u5fc3\u7406\u5065\u5eb7\u5c0d\u65bc\u7f55\u898b\u75c5\u7684\u65c5\u7a0b\u540c\u6a23\u91cd\u8981\u3002\u7576\u6709\u4eba\u5206\u4eab\u4ed6\u5011\u7684\u6545\u4e8b\u4e26\u807d\u5230\u4e00\u500b\u8072\u97f3\u8aaa\u201c\u6211\u660e\u767d\u201d\u6642\uff0c\u6cbb\u7652\u4ee5\u4e00\u7a2e\u5168\u65b0\u7684\u65b9\u5f0f\u958b\u59cb\u3002 <\/p>\n

    \u5fd7\u9858\u8005\u901a\u5e38\u6703\u5728\u6bcf\u6b21\u804a\u5929\u524d\u6e96\u5099\u6750\u6599\uff0c\u8ddf\u9032\u53c3\u8207\u8005\uff0c\u4e26\u5728\u6703\u8b70\u4e4b\u9593\u5275\u9020\u9023\u7e8c\u6027\uff0c\u8b93\u65b0\u6210\u54e1\u611f\u5230\u53d7\u6b61\u8fce\uff0c\u8b93\u56de\u982d\u5ba2\u611f\u5230\u88ab\u95dc\u6ce8\u3002\u4ed6\u5011\u5728\u505a\u9019\u4e00\u5207\u7684\u540c\u6642\uff0c\u9084\u8981\u7ba1\u7406\u81ea\u5df1\u7684\u751f\u6d3b\u3001\u5bb6\u5ead\uff0c\u901a\u5e38\u9084\u6709\u4ed6\u5011\u81ea\u5df1\u7684 ECD\u76f8\u95dc\u65c5\u7a0b\u3002 <\/p>\n

    \u4e00\u500b\u70ba\u5728\u5df4\u585e\u7f85\u90a3\u5efa\u7acb\u806f\u7e6b\u505a\u6e96\u5099\u7684\u793e\u5340<\/h3>\n

    \u5728\u6211\u5011\u6176\u795d\u672c\u6708\u4e3b\u6301\u4eba\u7684\u540c\u6642\uff0c\u6211\u5011\u4e5f\u671f\u5f85\u8457\u5373\u5c07\u65bc 5 \u6708\u5728\u7f8e\u9e97\u7684\u897f\u73ed\u7259\u5df4\u585e\u7f85\u90a3<\/strong>\u8209\u884c\u7684 ECD \u60a3\u8005\u548c\u5bb6\u5ead\u805a\u6703\u548c\u91ab\u5b78\u7814\u8a0e\u6703<\/strong>\u3002\u8a31\u591a\u804a\u5929\u53c3\u8207\u8005\u5c07\u51fa\u5e2d\uff0c\u9019\u63d0\u4f9b\u4e86\u7368\u7279\u7684\u6a5f\u6703\uff0c\u53ef\u4ee5\u8207\u6211\u5011\u53ea\u901a\u904e\u87a2\u5e55\u548c\u8072\u97f3\u8a8d\u8b58\u7684\u4eba\u9762\u5c0d\u9762\u4ea4\u6d41\u3002 <\/p>\n

    \u9019\u4e9b\u805a\u6703\u6709\u529b\u5730\u63d0\u9192\u6211\u5011\uff0c\u662f\u4ec0\u9ebc\u8b93 ECDGA \u793e\u5340\u5982\u6b64\u975e\u51e1\uff1a\u4eba\u3002\u5fd7\u9858\u8005\u3002\u9019\u4e9b\u8072\u97f3\u633a\u8eab\u800c\u51fa\u4e0d\u662f\u56e0\u70ba\u4ed6\u5011\u5fc5\u9808\u9019\u6a23\u505a\uff0c\u800c\u662f\u56e0\u70ba\u4ed6\u5011 \u60f3\u9019\u6a23\u505a<\/em>\u2014\u2014\u56e0\u70ba\u4ed6\u5011\u95dc\u5fc3\u3002 <\/p>\n

    \u5df4\u585e\u7f85\u90a3\u5c07\u4e0d\u50c5\u50c5\u662f\u4e00\u500b\u6703\u8b70\u3002\u9019\u5c07\u662f\u4e00\u6b21\u91cd\u805a\u3002\u6709\u6a5f\u6703\u89aa\u81ea\u5411\u6211\u5011\u7684\u5fd7\u9858\u8005\u8868\u793a\u9072\u4f86\u7684\u201c\u8b1d\u8b1d\u201d\u3002\u4e00\u500b\u6176\u795d\u7531\u5584\u826f\u548c\u670d\u52d9\u5851\u9020\u7684\u793e\u5340\u7684\u529b\u91cf\u548c\u97cc\u6027\u7684\u7a7a\u9593\u3002 <\/p>\n

    \u52a0\u5165\u6211\u5011\uff0c\u4e00\u8d77\u8aaa\u8b1d\u8b1d<\/h3>\n

    \u5728\u9019\u500b\u5fd7\u9858\u8005\u6708\uff0c\u6211\u5011\u9080\u8acb\u60a8\u52a0\u5165\u6211\u5011\uff0c\u6176\u795d\u9019\u4e9b\u4e86\u4e0d\u8d77\u7684\u4eba\u3002\u5728\u4e0b\u6b21\u804a\u5929\u6642\u4f38\u51fa\u63f4\u624b\uff0c\u767c\u9001\u611f\u8b1d\u4fe1\uff0c\u6216\u8005\u53ea\u662f\u6253\u958b\u651d\u50cf\u982d\u4e26\u655e\u958b\u5fc3\u6249\u53c3\u52a0\u6703\u8b70\u3002\u6211\u5011\u7684\u7248\u4e3b\u4ed8\u51fa\u4e86\u5f88\u591a – \u8b93\u6211\u5011\u901a\u904e\u8a8d\u53ef\u4ed6\u5011\u7684\u5f71\u97ff\u4f86\u56de\u5831\u4ed6\u5011\u7684\u9752\u775e\u3002 <\/p>\n

    \u56e0\u70ba\u7576\u4f60\u525d\u958b\u7814\u7a76\u3001\u5ba3\u50b3\u548c\u652f\u6301\u5c64\u5c64\u6642\uff0c\u6211\u5011\u5de5\u4f5c\u7684\u771f\u6b63\u57fa\u790e\u6c38\u9060\u662f\u5b83\u80cc\u5f8c\u7684\u4eba\u3002<\/p>\n

    \u5728 ECDGA\uff0c\u9019\u500b\u57fa\u790e\u5f88\u5f37\u5927\uff0c\u56e0\u70ba\u5b83\u662f\u7531\u5fd7\u9858\u8005\u5efa\u7acb\u7684\u3002<\/p>\n

    \n

    Erdheim-Chester \u75c5\u5168\u7403\u806f\u76df \uff08ECDGA \u4e0d\u63d0\u4f9b\u91ab\u7642\u5efa\u8b70\u3001\u8a3a\u65b7\u6216\u6cbb\u7642\u3002\u6240\u6709\u5167\u5bb9\u50c5\u4f9b\u53c3\u8003\u3002\u5982\u6709\u91ab\u7642\u554f\u984c\uff0c\u8acb\u8aee\u8a62\u91ab\u7642\u4fdd\u5065\u63d0\u4f9b\u8005\u3002 <\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

    \u7576\u4eba\u5011\u7b2c\u4e00\u6b21\u807d\u5230 Erdheim-Chester \u75c5 \uff08EC […]<\/p>\n","protected":false},"author":20,"featured_media":53246,"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":[520,504,514,528,510,502,526,512,516,522,508,530,524,518,506],"class_list":["post-54922","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-rarebutstrong-zh-hant","tag-tealandnavy-zh-hant","tag--ecd","tag-530","tag-raredisease","tag-518","tag-506"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/54922","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\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/comments?post=54922"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/posts\/54922\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media\/53246"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media?parent=54922"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/categories?post=54922"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/tags?post=54922"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}