{"id":176045,"date":"2026-09-08T05:35:09","date_gmt":"2026-09-08T10:35:09","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=176045"},"modified":"2026-09-22T10:20:19","modified_gmt":"2026-09-22T15:20:19","slug":"%e6%b2%a1%e6%9c%89%e4%ba%ba%e5%ba%94%e8%af%a5%e7%8b%ac%e8%87%aa%e9%9d%a2%e5%af%b9%e7%bd%95%e8%a7%81%e7%97%85","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/no-one-should-have-to-navigate-a-rare-disease-alone\/","title":{"rendered":"No one should have to navigate a rare disease alone"},"content":{"rendered":"

\u4eb2\u7231\u7684ECDGA\u793e\u533a\u6210\u5458\u4eec\uff1a,<\/p>\n

\u6ca1\u6709\u4eba\u5e94\u8be5\u72ec\u81ea\u9762\u5bf9\u7f55\u89c1\u75c5\u3002.<\/strong><\/p>\n

\u968f\u7740\u6211\u4eec\u8fdb\u5165\u6700\u540e\u4e00\u5468\u7684 \u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u5ba3\u4f20\u6708<\/strong>, \uff0c\u6211\u4eec\u7684\u5173\u6ce8\u70b9\u8f6c\u5411\u4e86\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\u7684\u6838\u5fc3\u5185\u5bb9\uff1a \u793e\u533a\u3002.<\/strong><\/p>\n

\u7814\u7a76\u4e3a\u672a\u6765\u5e26\u6765\u4e86\u5e0c\u671b\u3002\u4f46\u60a3\u6709\u65e9\u671f\u513f\u7ae5\u53d1\u80b2\u969c\u788d\uff08ECD\uff09\u7684\u4eba\u53ca\u5176\u4eb2\u4eba\uff0c\u4eca\u5929\u4e5f\u9700\u8981\u652f\u6301\u3001\u8054\u7cfb\u548c\u7406\u89e3\u3002.<\/p>\n

\u672c\u5468\uff0c\u6211\u4eec\u5c06\u91cd\u70b9\u4ecb\u7ecd\u90a3\u4e9b\u4e3a\u6b64\u505a\u51fa\u8d21\u732e\u7684\u4eba\u58eb\u548c\u8d44\u6e90\uff1a<\/p>\n

\u60a3\u8005\u5bfc\u822a\u5458<\/strong>
\n\u5728\u6574\u4e2a\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u8fc7\u7a0b\u4e2d\uff0c\u5e2e\u52a9\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u83b7\u53d6\u4fe1\u606f\u3001\u8d44\u6e90\u5e76\u5efa\u7acb\u8054\u7cfb\u3002.<\/p>\n

\u652f\u6301\u5c0f\u7ec4<\/strong>
\n\u521b\u9020\u673a\u4f1a\uff0c\u8ba9\u60a3\u8005\u80fd\u591f\u4e0e\u540c\u6837\u4e86\u89e3\u7f55\u89c1\u75c5\u60a3\u8005\u751f\u6d3b\u6311\u6218\u7684\u4eba\u4eec\u5efa\u7acb\u8054\u7cfb\u3002.<\/p>\n

\u60a3\u8005\u4e0e\u793e\u533a\u6545\u4e8b<\/strong>
\n\u8fd9\u63d0\u9192\u6211\u4eec\uff0c\u6bcf\u4e00\u4e2a\u8bca\u65ad\u80cc\u540e\uff0c\u90fd\u6709\u4e00\u4f4d\u60a3\u8005\u3001\u4e00\u4e2a\u5bb6\u5ead\uff0c\u4ee5\u53ca\u4e00\u4e2a\u503c\u5f97\u503e\u542c\u7684\u6545\u4e8b\u3002.<\/p>\n

\u5bb6\u5ead\u4e0e\u7167\u62a4\u8005<\/strong>
\n\u5411\u90a3\u4e9b\u6bcf\u5929\u4e3a\u6211\u4eec\u63d0\u4f9b\u5173\u6000\u3001\u9f13\u52b1\u3001\u652f\u6301\u548c\u529b\u91cf\u7684\u4eba\u4eec\u81f4\u656c\u3002.<\/p>\n

\u5fd7\u613f\u8005<\/strong>
\n\u5411\u90a3\u4e9b\u5949\u732e\u81ea\u5df1\u7684\u65f6\u95f4\u548c\u624d\u80fd\u3001\u81f4\u529b\u4e8e\u52a0\u5f3a\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u793e\u533a\u5efa\u8bbe\u7684\u4eba\u4eec\u81f4\u656c\u3002.<\/p>\n

\u5021\u5bfc<\/strong>
\n\u52a9\u529b\u63d0\u5347\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u7684\u5173\u6ce8\u5ea6\uff0c\u5e76\u786e\u4fdd\u60a3\u8005\u53ca\u5bb6\u5c5e\u7684\u58f0\u97f3\u5f97\u5230\u503e\u542c\u3002.<\/p>\n

\u672c\u5468\uff0c\u4f60\u53ef\u4ee5\u505a\u51fa\u6539\u53d8<\/strong><\/p>\n

CONNECT<\/strong>
\n\u8054\u7cfb\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u793e\u533a\u4e2d\u7684\u67d0\u4f4d\u6210\u5458\u3002.<\/p>\n

\u5206\u4eab<\/strong>
\n\u5c06ECDGA\u7684\u8d44\u6e90\u6216\u6545\u4e8b\u5206\u4eab\u7ed9\u53ef\u80fd\u9700\u8981\u7684\u4eba\u3002.<\/p>\n

\u652f\u6301<\/strong>
\n\u5411\u60a3\u8005\u3001\u62a4\u7406\u4eba\u5458\u6216\u5bb6\u5c5e\u8868\u793a\u9f13\u52b1\u3002.<\/p>\n

ACT<\/strong>
\n\u5021\u5bfc\u3001\u5fd7\u613f\u670d\u52a1\u3001\u5206\u4eab\u6216\u6350\u8d60\u3002\u6bcf\u4e00\u4efd\u884c\u52a8\u90fd\u5728\u8ba9\u6211\u4eec\u7684\u793e\u533a\u66f4\u5f3a\u5927\u3002.<\/p>\n

ECD\u867d\u7136\u7f55\u89c1\uff0c\u4f46 \u4efb\u4f55\u53d7\u6b64\u5f71\u54cd\u7684\u4eba\u90fd\u4e0d\u5e94\u611f\u5230\u5b64\u5355\u3002.<\/strong><\/p>\n

\u60a3\u8005\u3002\u62a4\u7406\u4eba\u5458\u3002\u5bb6\u5c5e\u3002\u533b\u751f\u3002\u7814\u7a76\u4eba\u5458\u3002\u5fd7\u613f\u8005\u3002\u6350\u8d60\u8005\u3002\u5021\u5bfc\u8005\u3002.<\/p>\n

\u6211\u4eec\u662f\u4e00\u4e2a\u5168\u7403\u6027\u7684\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u793e\u533a\u3002.<\/strong><\/p>\n

\u53ea\u8981\u6211\u4eec\u9f50\u5fc3\u534f\u529b\uff0c\u5c31\u80fd\u786e\u4fdd\u6bcf\u4f4d\u53d7\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5f71\u54cd\u7684\u4eba\u90fd\u77e5\u9053\uff0c\u6709\u4e00\u4e2a\u793e\u533a\u59cb\u7ec8\u4e0e\u4ed6\u4eec\u540c\u5728\u3002.<\/p>\n

\u6ca1\u6709\u4eba\u9700\u8981\u72ec\u81ea\u9762\u5bf9\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u7684\u6311\u6218\u3002.<\/strong><\/p>\n

\u4eca\u65e5\u7684\u77e5\u8bc6\uff0c\u660e\u5929\u7684\u5e0c\u671b\u3002.<\/strong><\/p>\n

\u8c28\u81f4\u8c22\u5ff1\uff0c,
\n\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df<\/strong><\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

Dear ECDGA Community, No one should have to navigate a rare disease alone. As we enter the final week of ECD Awareness Month, our focus turns to something at the […]<\/p>\n","protected":false},"author":27,"featured_media":176109,"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-176045","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\/176045","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=176045"}],"version-history":[{"count":3,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/176045\/revisions"}],"predecessor-version":[{"id":176294,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/176045\/revisions\/176294"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/176109"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=176045"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=176045"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=176045"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}