{"id":5072,"date":"2020-02-25T23:30:43","date_gmt":"2020-02-25T23:30:43","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=5072"},"modified":"2025-08-23T20:21:24","modified_gmt":"2025-08-24T00:21:24","slug":"2020%e5%b9%b4%e7%bd%95%e8%a7%81%e7%97%85%e6%97%a5","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/rare-disease-day-2020\/","title":{"rendered":"2020\u5e74\u7f55\u89c1\u75c5\u65e5"},"content":{"rendered":"<h4>\u547c\u5401\u6240\u6709\u5021\u5bfc\u8005\uff01<\/h4>\n<p><em>2020\u5e742\u670829\u65e5<\/em>, \uff0c\u8fd9\u5c06\u662fEURORDIS\u534f\u8c03\u4e3e\u529e\u7684\u7b2c30\u4e2a\u201c\u56fd\u9645\u7f55\u89c1\u75c5\u65e5\u201d\u3002\u5728\u8fd9\u4e00\u5929\u53ca\u524d\u540e\uff0c\u6765\u81ea\u4e16\u754c\u5404\u5730\u7684\u6570\u767e\u4e2a\u60a3\u8005\u7ec4\u7ec7\u5c06\u4e3e\u529e\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\u7684\u6d3b\u52a8\u3002.&nbsp;&nbsp;<\/p>\n<p>\u7ea6\u67093\u4ebf\u4eba\uff08\u7ea6\u5360\u603b\u4eba\u53e3\u76845%\uff09\u60a3\u6709\u7f55\u89c1\u75c5\u3002\u5728\u8fd95%\u4e2d\uff0c\u5168\u7403\u60a3\u6709\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u7684\u60a3\u8005\u4e0d\u8db31,000\u4eba\u3002.&nbsp;&nbsp;<\/p>\n<p><strong>J<\/strong><strong>\u52a0\u5165ECD\u5168\u7403\u8054\u76df\uff0c\u901a\u8fc7\u5206\u4eab\u60a8\u4e0eECD\u76f8\u5173\u7684\u7ecf\u5386\uff0c\u5171\u540c\u63d0\u9ad8\u516c\u4f17\u5bf9\u7f55\u89c1\u75c5\u7684\u8ba4\u8bc6\u3002.<\/strong>&nbsp;&nbsp;<\/p>\n<p>2020\u5e74\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u7684\u4e3b\u9898\u662f\u201c<em>\u4e3a\u6570\u767e\u4e07\u7f55\u89c1\u75c5\u60a3\u8005\u4e89\u53d6\u516c\u5e73\u6743\u76ca\uff01<\/em>\u201d&nbsp;&nbsp;<\/p>\n<ul>\n<li>\u5728\u5bfb\u6c42\u533b\u7597\u670d\u52a1\u65f6\uff0c\u60a8\u9047\u5230\u4e86\u54ea\u4e9b\u969c\u788d\uff1f&nbsp;<\/li>\n<li>\u5728\u793e\u4ea4\u4e92\u52a8\u548c\u6d3b\u52a8\u4e2d\uff0c\u54ea\u4e9b\u8d1f\u62c5\u4f1a\u5f71\u54cd\u60a8\u7684\u5bb6\u5ead\uff1f&nbsp;<\/li>\n<li>\u5173\u4e8e\u60a3\u6709\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u7684\u751f\u6d3b\uff0c\u4f60\u60f3\u8ba9\u5168\u4e16\u754c\u4e86\u89e3\u4e9b\u4ec0\u4e48\uff1f<\/li>\n<\/ul>\n<p>\u4f60\u5c06\u5982\u4f55\u5c55\u73b0\u81ea\u5df1\u7684\u98ce\u91c7\uff1f\u8bf7\u5728\u793e\u4ea4\u5a92\u4f53\u4e0a\u4e0e\u6211\u4eec\u5206\u4eab\uff0c\u5728Facebook\u4e0a\u6807\u8bb0@ECDGA\uff0c\u5e76\u5728\u4efb\u4f55\u5e73\u53f0\u4e0a\u6807\u8bb0#ECDawareness\u3002\u8bf7\u8054\u7cfb\u6211\u4eec\uff0c\u6211\u4eec\u5c06\u628a\u4f60\u7684\u6545\u4e8b\u3001\u611f\u8a00\u3001\u7167\u7247\u548c\/\u6216\u5e16\u5b50\u53d1\u5e03\u5728\u6211\u4eec\u7684Facebook\u516c\u5f00\u4e3b\u9875\u4e0a\u3002.<\/p>\n<p>\u8bf7\u5728\u60a8\u7684\u793e\u4ea4\u5a92\u4f53\u9875\u9762\u4e0a\u5206\u4eab\u8fd9\u5f20\u4f20\u5355\uff0c\u6216\u901a\u8fc7\u7535\u5b50\u90ae\u4ef6\u53d1\u9001\u7ed9\u60a8\u7684\u8054\u7cfb\u4eba\uff01&nbsp;<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/02\/Facebook-RDD-2020.png\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-5074 size-medium\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/02\/Facebook-RDD-2020-300x251.png\" alt=\"\" width=\"300\" height=\"251\"><\/a><\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>CALLING ALL ADVOCATES! February 29, 2020, will be the 30th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries and regions [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":5073,"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":[55,54,59,53,58,56,69,57,68,75],"class_list":["post-5072","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-advocacy","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-pain","tag-rare-disease-day"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/5072","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=5072"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/5072\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/5073"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=5072"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=5072"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=5072"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}