{"id":46398,"date":"2025-03-21T10:26:50","date_gmt":"2025-03-21T14:26:50","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=46398"},"modified":"2026-08-19T05:44:28","modified_gmt":"2026-08-19T10:44:28","slug":"2025%e5%b9%b4%e7%bd%95%e8%a7%81%e7%97%85%e6%97%a5%ef%bc%9a%e8%81%9a%e7%84%a6%e5%9f%83%e5%b0%94%e5%be%b7%e6%b5%b7%e5%a7%86-%e5%88%87%e6%96%af%e7%89%b9%e7%97%85%ef%bc%88erd-2%ef%bc%89%e7%9a%84%e8%89%af","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/rare-disease-day-2025-a-chance-to-shine-a-light-on-erdheim-chester-disease-2\/","title":{"rendered":"2025\u5e74\u7f55\u89c1\u75c5\u65e5\uff1a\u8ba9\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u8d70\u8fdb\u516c\u4f17\u89c6\u91ce\u7684\u5951\u673a"},"content":{"rendered":"<p>\u6bcf\u5e742\u6708\u7684\u6700\u540e\u4e00\u5929\uff0c\u5168\u7403\u5404\u5730\u7684\u4eba\u4eec\u90fd\u4f1a\u9f50\u805a\u4e00\u5802\uff0c\u5171\u540c\u7eaa\u5ff5\u00a0<strong>\u7f55\u89c1\u75c5\u65e5<\/strong>\u2014\u2014\u8fd9\u662f\u4e00\u9879\u81f3\u5173\u91cd\u8981\u7684\u4e3e\u63aa\uff0c\u7a81\u663e\u4e86\u7f55\u89c1\u75c5\u60a3\u8005\u6240\u9762\u4e34\u7684\u6311\u6218\u3002\u5728\u00a0<strong>2025\u5e742\u670828\u65e5<\/strong>, \uff0c\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\uff08ECDGA\uff09\u5f88\u8363\u5e78\u80fd\u52a0\u5165\u8fd9\u4e00\u5168\u7403\u6027\u884c\u52a8\uff0c\u4ee5\u63d0\u9ad8\u4eba\u4eec\u5bf9\u00a0<strong>\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09<\/strong>\u00a0and the urgent need for greater research, diagnosis, and treatment advancements.<\/p>\n<p>ECD \u662f\u4e00\u79cd\u00a0<strong>\u6781\u7f55\u89c1\u7684\u8840\u6db2\u764c\u75c7<\/strong>\u00a0\u8be5\u75c5\u4f1a\u5f71\u54cd\u591a\u4e2a\u5668\u5b98\uff0c\u5305\u62ec\u9aa8\u9abc\u3001\u5fc3\u810f\u3001\u5927\u8111\u548c\u80be\u810f\u3002\u7531\u4e8e\u8be5\u75c5\u5341\u5206\u7f55\u89c1\uff0c\u8bb8\u591a\u60a3\u8005\u4e0d\u5f97\u4e0d\u5fcd\u53d7\u00a0<strong>\u591a\u5e74\u7684\u8bef\u8bca<\/strong>\u00a0\u5728\u5f97\u5230\u6b63\u786e\u7684\u8bca\u65ad\u548c\u6cbb\u7597\u4e4b\u524d\u3002\u4eca\u5e74\uff0c\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u4e3a\u7f55\u89c1\u75c5\u60a3\u8005\u7fa4\u4f53\u63d0\u4f9b\u4e86\u4e00\u4e2a\u9f50\u805a\u4e00\u5802\u3001\u5206\u4eab\u6545\u4e8b\u5e76\u5021\u5bfc\u53d8\u9769\u7684\u673a\u4f1a\u3002.<\/p>\n<h3>\u60a8\u80fd\u5982\u4f55\u5e2e\u52a9\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\uff1f<\/h3>\n<ol start=\"1\" data-spread=\"false\">\n<li><strong>\u5206\u4eab\u4f60\u7684\u6545\u4e8b<\/strong>\u00a0\u2013 Personal experiences are powerful. By sharing stories of those affected by ECD, we can help others understand the challenges of living with a rare disease and encourage early diagnosis.<\/li>\n<li><strong>\u5728\u793e\u4ea4\u5a92\u4f53\u4e0a\u4e92\u52a8<\/strong>\u00a0\u2013 Use Rare Disease Day 2025 as a platform to post about ECD, using official hashtags and tagging advocacy organizations to expand our reach.<\/li>\n<li><strong>\u666e\u53ca\u77e5\u8bc6\u4e0e\u63d0\u4f9b\u4fe1\u606f<\/strong>\u00a0\u2013 Encourage friends, family, and healthcare professionals to learn more about ECD by directing them to the ECDGA website and Rare Disease Day resources.<\/li>\n<li><strong>\u652f\u6301\u7814\u7a76\u4e0e\u7b79\u6b3e<\/strong>\u00a0\u2013 Donations and research funding are critical for developing new treatments. Consider supporting ECDGA\u2019s initiatives to help advance medical understanding of ECD.<\/li>\n<li><strong>\u7a7f\u6591\u9a6c\u7eb9\u6216\u9752\u7eff\u8272\u4e0e\u6d77\u519b\u84dd<\/strong>\u00a0\u2013 \u8bb8\u591a\u7f55\u89c1\u75c5\u7ec4\u7ec7\u5c06\u6591\u9a6c\u4f5c\u4e3a\u7f55\u89c1\u6027\u7684\u8c61\u5f81\uff0c\u800cECDGA\u7684\u9752\u7eff\u8272\u548c\u6d77\u519b\u84dd\u5219\u4ee3\u8868\u7740\u6211\u4eec\u793e\u533a\u5185\u7684\u5e0c\u671b\u4e0e\u56e2\u7ed3\u3002.<\/li>\n<\/ol>\n<h3>\u6210\u4e3a\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u7fa4\u4f53\u7684\u4ee3\u8a00\u4eba<\/h3>\n<p>\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u4e0d\u4ec5\u4ec5\u662f\u4e00\u4e2a\u65e5\u5386\u4e0a\u7684\u65e5\u671f\u2014\u2014\u5b83\u662f\u4e00\u4e2a\u8ba9\u5168\u7403\u5173\u6ce8\u50cfECD\u8fd9\u6837\u5f80\u5f80\u88ab\u5ffd\u89c6\u7684\u75be\u75c5\u7684\u673a\u4f1a\u3002\u901a\u8fc7\u91c7\u53d6\u884c\u52a8\uff0c\u6211\u4eec\u53ef\u4ee5\u589e\u8fdb\u7406\u89e3\u3001\u63a8\u52a8\u7814\u7a76\u5de5\u4f5c\uff0c\u5e76\u786e\u4fdd\u6ca1\u6709\u4eba\u72ec\u81ea\u9762\u5bf9ECD\u3002.<\/p>\n<p>Join us on\u00a0<strong>2025\u5e742\u670828\u65e5<\/strong>, \uff0c\u4ee5\u63d0\u9ad8\u4eba\u4eec\u5bf9\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u7684\u8ba4\u8bc6\u3002\u8bf7\u8bbf\u95ee\u00a0<a href=\"https:\/\/www.erdheim-chester.org\/zh\/\">ECDGA\u7f51\u7ad9<\/a>\u00a0\u548c\u00a0<a href=\"https:\/\/www.rarediseaseday.org\/\" target=\"_blank\" rel=\"noopener\">\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u5b98\u65b9\u9875\u9762<\/a>\u00a0\u4e86\u89e3\u66f4\u591a\u4fe1\u606f\u5e76\u53c2\u4e0e\u8fdb\u6765\uff01<\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/ribbon.png\"><img loading=\"lazy\" decoding=\"async\" class=\"alignnone wp-image-55040 size-medium\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/05\/ribbon-300x300.png\" alt=\"\" width=\"300\" height=\"300\" \/><\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>Every year, on the last day of February, the global community comes together to recognize\u00a0Rare Disease Day\u2014a vital initiative that highlights the challenges faced by individuals living with rare conditions. [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":44723,"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-46398","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\/46398","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=46398"}],"version-history":[{"count":1,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/46398\/revisions"}],"predecessor-version":[{"id":175251,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/46398\/revisions\/175251"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/44723"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=46398"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=46398"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=46398"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}