{"id":46370,"date":"2025-03-21T10:23:31","date_gmt":"2025-03-21T14:23:31","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=46370"},"modified":"2025-08-23T17:13:31","modified_gmt":"2025-08-23T21:13:31","slug":"2%e6%9c%8828%e6%97%a5%e6%98%af%e7%bd%95%e8%a7%81%e7%97%85%e6%97%a5%ef%bc%8c%e4%bd%a0%e6%89%93%e7%ae%97%e5%81%9a%e4%bb%80%e4%b9%88%ef%bc%9f","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/rare-disease-day-is-february-28-what-do-you-plan-to-do\/","title":{"rendered":"2\u670828\u65e5\u662f\u201c\u7f55\u89c1\u75c5\u65e5\u201d\uff1a\u4f60\u6253\u7b97\u505a\u4e9b\u4ec0\u4e48\uff1f"},"content":{"rendered":"<p data-start=\"65\" data-end=\"360\">\u5728\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09\u4ee5\u53ca\u6240\u6709\u7f55\u89c1\u75c5\u7684\u6cbb\u7597\u7814\u7a76\u65b9\u9762\uff0c\u4ecd\u6709\u5927\u91cf\u5de5\u4f5c\u4e9f\u5f85\u5f00\u5c55\u3002\u4f5c\u4e3a\u4e00\u79cd\u5f71\u54cd\u591a\u4e2a\u5668\u5b98\u7684\u8d85\u7f55\u89c1\u8840\u6db2\u764c\u75c7\uff0cECD\u81f3\u4eca\u4ecd\u666e\u904d\u672a\u88ab\u5145\u5206\u8ba4\u8bc6\uff0c\u8bb8\u591a\u60a3\u8005\u9762\u4e34\u8bca\u65ad\u5ef6\u8bef\u4e14\u6cbb\u7597\u9009\u62e9\u6709\u9650\u7684\u95ee\u9898\u3002.<\/p>\n<p data-start=\"362\" data-end=\"661\">\u6b63\u56e0\u5982\u6b64\uff0c\u6211\u4eec\u4e0e\u7f55\u89c1\u75c5\u7fa4\u4f53\u643a\u624b\uff0c\u5171\u540c\u652f\u6301\u00a0<strong data-start=\"428\" data-end=\"447\">1TP5\u7f55\u89c1\u75c5\u65e5<\/strong>\u00a02\u670828\u65e5\u3002\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\u81f3\u5173\u91cd\u8981\u2014\u2014\u8fd9\u6709\u52a9\u4e8e\u5b9e\u73b0\u65e9\u671f\u8bca\u65ad\u3001\u63a8\u52a8\u7814\u7a76\u8fdb\u5c55\u5e76\u6539\u5584\u6cbb\u7597\u65b9\u6848\u3002\u8ba9\u6211\u4eec\u643a\u624b\u52aa\u529b\uff0c\u4e3a\u5168\u74033\u4ebf\u7f55\u89c1\u75c5\u60a3\u8005\u5e26\u6765\u6539\u53d8\u3002.<\/p>\n<p data-start=\"663\" data-end=\"1138\">ECD\u53ea\u662f7,000\u591a\u79cd\u7f55\u89c1\u75c5\u4e2d\u7684\u4e00\u79cd\uff0c\u4e0e\u8bb8\u591a\u5176\u4ed6\u7f55\u89c1\u75c5\u4e00\u6837\uff0c\u76ee\u524d\u5c1a\u65e0\u5df2\u77e5\u7684\u6cbb\u6108\u65b9\u6cd5\u3002\u4f46\u5f97\u76ca\u4e8e\u516c\u4f17\u610f\u8bc6\u7684\u63d0\u9ad8\u548c\u7814\u7a76\u7684\u4e0d\u65ad\u8fdb\u6b65\uff0c\u76f8\u5173\u5de5\u4f5c\u6b63\u5728\u53d6\u5f97\u8fdb\u5c55\u3002 \u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\uff08ECDGA\uff09\u5df2\u8d44\u52a9\u4e86\u591a\u9879\u7814\u7a76\u8ba1\u5212\uff0c\u6211\u4eec\u5c06\u7ee7\u7eed\u63a8\u52a8\u65b0\u7684\u53d1\u73b0\uff0c\u4e3a\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u5e26\u6765\u5e0c\u671b\u3002\u5728\u4e89\u53d6\u66f4\u597d\u6cbb\u7597\u65b9\u6cd5\u548c\u66f4\u5149\u660e\u672a\u6765\u7684\u6597\u4e89\u4e2d\uff0c\u60a8\u7684\u58f0\u97f3\u3001\u60a8\u7684\u5021\u5bfc\u4ee5\u53ca\u60a8\u7684\u652f\u6301\u90fd\u81f3\u5173\u91cd\u8981\u3002.<\/p>\n<p>\u652f\u63012\u670828\u65e5\u7684\u201c1TP5\u7f55\u89c1\u75c5\u65e5\u201d\u3002.<\/p>\n<p>\u4e86\u89e3\u60a8\u53ef\u4ee5\u91c7\u53d6\u54ea\u4e9b\u884c\u52a8\u6765\u63d0\u4f9b\u5e2e\u52a9\uff1a\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><\/p>\n<p>\u5206\u4eab\u4f60\u7684\u8272\u5f69\uff1a\u00a0<a href=\"https:\/\/www.rarediseaseday.org\/#share-your-colours\" target=\"_blank\" rel=\"noopener\" aria-label=\"https:\/\/www.rarediseaseday.org\/#share-your-colours - \u5728\u65b0\u6807\u7b7e\u9875\u4e2d\u6253\u5f00\">https:\/\/www.rarediseaseday.org\/#share-your-colours<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>There is so much progress yet to be made in researching treatments for Erdheim-Chester Disease (ECD) and all rare diseases. As an ultra-rare blood cancer that affects multiple organs, ECD [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":46371,"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-46370","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\/46370","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=46370"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/46370\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/46371"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=46370"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=46370"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=46370"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}