{"id":19549,"date":"2021-02-17T17:02:46","date_gmt":"2021-02-17T17:02:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=19549"},"modified":"2026-08-19T07:08:41","modified_gmt":"2026-08-19T12:08:41","slug":"2021%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\/2021-rare-disease-day\/","title":{"rendered":"2021\u5e74\u7f55\u89c1\u75c5\u65e5"},"content":{"rendered":"<h1><strong>\u4ec0\u4e48\u662f\u201c\u7f55\u89c1\u75c5\u65e5\u201d\uff1f<\/strong><\/h1>\n<p><em>2021\u5e742\u670828\u65e5<\/em>, \uff0c\u8fd9\u5c06\u662fEURORDIS\u534f\u8c03\u4e3e\u529e\u7684\u7b2c14\u4e2a\u56fd\u9645\u7f55\u89c1\u75c5\u65e5\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.<\/p>\n<p>Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within that 5%, less than 1,000 people suffer from\u00a0Erdheim-Chester Disease worldwide.<\/p>\n<p><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><\/p>\n<p><a href=\"https:\/\/twitter.com\/intent\/tweet?url=https%3A\/\/youtu.be\/3bxaP9FJKnk&amp;text=Rare%20Disease%20Day%202021%20official%20video&amp;via=YouTube&amp;related=YouTube,YouTubeTrends,YTCreators\" target=\"_blank\" rel=\"noopener noreferrer\">\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u5b98\u65b9\u89c6\u9891\u00a0<\/a><\/p>\n<p>\u5728\u6211\u4eec\u7684\u7f51\u7ad9\u4e0a\u67e5\u627e\u66f4\u591a\u8d44\u6e90\u548c\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\u7684\u65b9\u6cd5 <a title=\"\u5e7f\u800c\u544a\u4e4b\" href=\"https:\/\/www.erdheim-chester.org\/zh\/%e5%b9%bf%e8%80%8c%e5%91%8a%e4%b9%8b\/\">\u5e7f\u800c\u544a\u4e4b<\/a> \u7f51\u9875\u4e0a\u6216 <a href=\"https:\/\/www.rarediseaseday.org\/article\/get-involved\">\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u7f51\u7ad9<\/a>.<\/p>\n<p>\u8bf7\u5728\u793e\u4ea4\u5a92\u4f53\u4e0a\u4e0e\u6211\u4eec\u5206\u4eab\u60a8\u7684\u4e00\u5929\uff0c\u65b9\u6cd5\u662f\u5728Facebook\u4e0a\u6807\u8bb0@ECDGA\uff0c\u5e76\u5728\u4efb\u4f55\u793e\u4ea4\u5a92\u4f53\u5e73\u53f0\u4e0a\u4f7f\u7528\u8bdd\u9898\u6807\u7b7e##ECDawareness\u3002\u5982\u679c\u60a8\u613f\u610f\uff0c\u4e5f\u8bf7\u8054\u7cfb\u6211\u4eec\uff0c\u4ee5\u4fbf\u6211\u4eec\u5c06\u60a8\u7684\u6545\u4e8b\u3001\u8bed\u5f55\u3001\u7167\u7247\u548c\/\u6216\u5e16\u5b50\u53d1\u5e03\u5728ECDGA\u7684\u793e\u4ea4\u5a92\u4f53\u9875\u9762\u4e0a\uff0c\u6211\u4eec\u5c06\u4e0d\u80dc\u611f\u6fc0\u3002.<\/p>\n<p><strong>\u8bf7\u9605\u8bfb\u6211\u4eec\u4e3a\u4eca\u5e74\u7684\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u53d1\u5e03\u7684\u6700\u65b0\u60a3\u8005\u6545\u4e8b\uff1a <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/A-Spiritual-Journey-Through-ECD-Dean-William.pdf\">\u901a\u8fc7\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u5c55\u5f00\u7684\u4e00\u6bb5\u7cbe\u795e\u4e4b\u65c5<\/a><\/strong><\/p>\n<p><strong>\u8bf7\u5728\u60a8\u7684\u793e\u4ea4\u5a92\u4f53\u9875\u9762\u4e0a\u6216\u901a\u8fc7\u7535\u5b50\u90ae\u4ef6\u5206\u4eab\u8fd9\u5f20\u4f20\u5355 <\/strong><strong>\u4e0e\u60a8\u7684\u8054\u7cfb\u4eba\u4e00\u8d77\uff01<\/strong><\/p>\n<p><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-175289 size-full alignleft\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg\" alt=\"\" width=\"232\" height=\"300\" srcset=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1.jpg 232w, https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2021\/02\/Rare-Disease-Day-2021-flyer-232x300-1-9x12.jpg 9w\" sizes=\"(max-width: 232px) 100vw, 232px\" \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><em><strong>\u65e0\u8bba\u60a8\u5728\u201c\u7f55\u89c1\u75c5\u65e5\u201d\u5f53\u5929\u505a\u4e9b\u4ec0\u4e48\uff0c\u60a8\u7684\u5021\u5bfc\u56e2\u4f53\u90fd\u5c06\u5168\u7a0b\u652f\u6301\u60a8\uff01\u611f\u8c22\u60a8\u81ea\u8c6a\u5730\u4f69\u6234\u7f55\u89c1\u75c5\u4e1d\u5e26\uff01<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"<p>WHAT IS RARE DISEASE DAY? February 28, 2021, will be the 14th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":19553,"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":[51,70],"tags":[55,101,83,54,59,53,58,56,69,57,82,52,75],"class_list":["post-19549","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research-awareness","tag-advocacy","tag-awareness","tag-blood-cancer","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-rare-cancer","tag-rare-disease","tag-rare-disease-day"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/19549","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=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}