{"id":46384,"date":"2025-03-21T10:24:34","date_gmt":"2025-03-21T14:24:34","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=46384"},"modified":"2025-08-23T17:13:30","modified_gmt":"2025-08-23T21:13:30","slug":"2%e6%9c%8828%e6%97%a5-%e7%bd%95%e8%a7%81%e7%97%85%e6%97%a5","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/february-28-rare-disease-day\/","title":{"rendered":"2\u670828\u65e5\uff1a\u7f55\u89c1\u75c5\u65e5"},"content":{"rendered":"<p>\u57282\u670828\u65e5\u201c#RareDiseaseDay\u201d\u8fd9\u4e00\u5929\uff0cECD\u5168\u7403\u8054\u76df\u901a\u8fc7\u5c55\u793a\u6761\u7eb9\u56fe\u6848\uff0c\u547c\u5401\u516c\u4f17\u5173\u6ce8\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u3002\u5168\u7403\u67093\u4ebf\u7f55\u89c1\u75c5\u60a3\u8005\u3002\u7531\u4e8e\u7f3a\u4e4f\u5173\u4e8e\u6bcf\u79cd\u7f55\u89c1\u75c5\u7684\u79d1\u5b66\u77e5\u8bc6\u548c\u4f18\u8d28\u4fe1\u606f\uff0c\u5f80\u5f80\u5bfc\u81f4\u8bca\u65ad\u5ef6\u8bef\u3002.<\/p>\n<p>&nbsp;<\/p>\n<p>\u60a3\u6709\u7f55\u89c1\u75c5\u7684\u60a3\u8005\u5f80\u5f80\u96be\u4ee5\u83b7\u5f97\u6cbb\u7597\u548c\u62a4\u7406\uff0c\u8fd9\u901a\u5e38\u4f1a\u7ed9\u60a3\u8005\u5e26\u6765\u6c89\u91cd\u7684\u793e\u4f1a\u548c\u7ecf\u6d4e\u8d1f\u62c5\u3002.<\/p>\n<p>\u7531\u4e8e\u75be\u75c5\u79cd\u7c7b\u7e41\u591a\uff0c\u4e14\u5e38\u89c1\u75c7\u72b6\u5f80\u5f80\u4f1a\u63a9\u76d6\u6f5c\u5728\u7684\u7f55\u89c1\u75c5\uff0c\u56e0\u6b64\u521d\u671f\u8bef\u8bca\u7684\u60c5\u51b5\u5f88\u5e38\u89c1\u3002\u6b64\u5916\uff0c\u75c7\u72b6\u4e0d\u4ec5\u56e0\u75c5\u800c\u5f02\uff0c\u5373\u4f7f\u662f\u60a3\u6709\u540c\u4e00\u75be\u75c5\u7684\u60a3\u8005\uff0c\u5176\u75c7\u72b6\u4e5f\u4f1a\u56e0\u4eba\u800c\u5f02\u3002.<\/p>\n<p>\u7814\u7a76\u5fc5\u987b\u5177\u6709\u56fd\u9645\u6027\uff0c\u4ee5\u786e\u4fdd\u4e13\u5bb6\u3001\u7814\u7a76\u4eba\u5458\u548c\u4e34\u5e8a\u533b\u751f\u4e4b\u95f4\u80fd\u591f\u4fdd\u6301\u8054\u7cfb<\/p>\n<p>\u6bcf\u4e2a\u4e2a\u4eba\u548c\u516c\u53f8\u90fd\u80fd\u4e3a\u6539\u5584\u7f55\u89c1\u75c5\u60a3\u8005\u7684\u533b\u7597\u670d\u52a1\u53ef\u53ca\u6027\u5e76\u4e3a\u76f8\u5173\u7814\u7a76\u63d0\u4f9b\u8d44\u91d1\u652f\u6301\u8d21\u732e\u4e00\u4efd\u529b\u91cf\u3002.<\/p>\n<p>ECD\u5168\u7403\u8054\u76df\u6bcf\u5929\u90fd\u5728\u52aa\u529b\u514b\u670d\u8fd9\u4e9b\u56f0\u96be\uff0c\u4e3a\u53d7\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u548c\u6210\u4eba\u7ec4\u7ec7\u7ec6\u80de\u589e\u751f\u75c7\u5f71\u54cd\u7684\u60a3\u8005\u63d0\u4f9b\u652f\u6301\u3002.<\/p>\n<p>\u8bbf\u95ee\u00a0<a href=\"http:\/\/bit.ly\/rdd2025\" target=\"_blank\" rel=\"noopener\" aria-label=\"http:\/\/bit.ly\/rdd2025 - \u5728\u65b0\u6807\u7b7e\u9875\u4e2d\u6253\u5f00\">http:\/\/bit.ly\/rdd2025<\/a>\u00a0\u4e86\u89e3\u66f4\u591a\u4fe1\u606f\uff0c\u5e76\u53c2\u4e0e #ShowYourStripes \u6d3b\u52a8<\/p>\n<p><strong>\u4e86\u89e3\u6709\u5173\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u7684\u66f4\u591a\u4fe1\u606f\uff1a<\/strong>\u00a0<a href=\"https:\/\/www.rarediseaseday.org\/what-is-a-rare-disease\/\" target=\"_blank\" rel=\"noopener\" aria-label=\"https:\/\/www.rarediseaseday.org\/what-is-a-rare-disease\/ - \u5728\u65b0\u6807\u7b7e\u9875\u4e2d\u6253\u5f00\">https:\/\/www.rarediseaseday.org\/what-is-a-rare-disease\/<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>ECD Global Alliance shows our stripes for Erdheim-Chester Disease awareness on #RareDiseaseDay, February 28. There are 300 million people with rare diseases. The lack of scientific knowledge and quality information [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":46385,"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-46384","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\/46384","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=46384"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/46384\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/46385"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=46384"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=46384"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=46384"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}