{"id":162802,"date":"2026-06-25T14:03:41","date_gmt":"2026-06-25T19:03:41","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=162802"},"modified":"2026-06-25T14:03:41","modified_gmt":"2026-06-25T19:03:41","slug":"%e8%87%b4%e6%88%91%e4%bb%ac%e7%a4%be%e5%8c%ba%e7%9a%84%e4%b8%80%e5%b0%81%e4%bf%a1","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/a-message-to-our-community\/","title":{"rendered":"\u81f4\u6211\u4eec\u793e\u533a\u7684\u4e00\u5c01\u4fe1"},"content":{"rendered":"

\u5f53\u6709\u4eba\u542c\u5230\u201c\u60a8\u60a3\u6709\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u201d\u8fd9\u53e5\u8bdd\u65f6\uff0c\u4ed6\u4eec\u5f80\u5f80\u4f1a\u6709\u66f4\u591a\u7591\u95ee\uff0c\u800c\u4e0d\u662f\u5f97\u5230\u7b54\u6848\u3002.<\/p>\n

    \n
  1. \u5728\u54ea\u91cc\u53ef\u4ee5\u627e\u5230\u76f8\u5173\u4fe1\u606f\uff1f<\/li>\n
  2. \u8c01\u80fd\u5e2e\u6211\u4e86\u89e3\u8fd9\u79cd\u75be\u75c5\uff1f<\/li>\n
  3. \u6709\u54ea\u4e9b\u6cbb\u7597\u65b9\u6848\uff1f<\/li>\n
  4. \u6211\u8be5\u5982\u4f55\u627e\u5230\u5176\u4ed6\u60a3\u6709\u8fd9\u79cd\u75be\u75c5\u7684\u4eba\uff1f<\/li>\n<\/ol>\n

    ECDGA \u6bcf\u5929\u90fd\u5728\u5e2e\u52a9\u89e3\u7b54\u8fd9\u4e9b\u95ee\u9898\u3002.<\/p>\n

    \u8bf7\u7acb\u5373\u6350\u8d60\u4e00\u7b14\u5339\u914d\u6350\u6b3e\uff0c\u4e3a\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u63d0\u4f9b\u652f\u6301\u3002.<\/p>\n

    \u6211\u4eec\u8ddd\u79bb\u8fbe\u6210\u201c$10,000.00\u201d\u914d\u5bf9\u6311\u6218\u7684\u76ee\u6807\u4ec5\u4e00\u6b65\u4e4b\u9065\u3002\u76ee\u524d\u5df2\u7b79\u96c6\u5230$7261.00\u3002\u8bf7\u5e2e\u52a9\u6211\u4eec\u57286\u670830\u65e5\u524d\u8fbe\u6210\u8fd9\u4e00\u914d\u5bf9\u76ee\u6807\u3002.<\/p>\n

    \u5728\u6b64\u6350\u6b3e<\/a><\/span><\/p>","protected":false},"excerpt":{"rendered":"

    When someone hears the words “You have Erdheim-Chester Disease,” they often have more questions than answers. Where do I find information? Who can help me understand this disease? What treatment […]<\/p>\n","protected":false},"author":27,"featured_media":162987,"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":[387,2252,5985,376],"class_list":["post-162802","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ecdga","tag-erdheimchester","tag-funrun","tag-raredisease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/162802","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\/27"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/comments?post=162802"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/162802\/revisions"}],"predecessor-version":[{"id":162986,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/162802\/revisions\/162986"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/162987"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=162802"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=162802"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=162802"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}