{"id":109872,"date":"2025-12-09T21:25:06","date_gmt":"2025-12-10T03:25:06","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=109872"},"modified":"2025-12-29T10:09:43","modified_gmt":"2025-12-29T16:09:43","slug":"ecdga%e9%a2%86%e5%af%bc%e5%b1%82%e5%9c%a8%e4%bd%9b%e7%bd%97%e9%87%8c%e8%be%be%e5%b7%9e%e5%a5%a5%e5%85%b0%e5%a4%9a%e5%b8%82%e4%b8%be%e8%a1%8c%e7%9a%84ash%e4%bc%9a%e8%ae%ae%e4%b8%8a%e5%ae%a3%e4%bc%a0ecd","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/ecdga-leadership-shares-ecd-awareness-at-ash-conference-in-orlando-fl\/","title":{"rendered":"ECDGA\u9886\u5bfc\u5c42\u5728\u4f5b\u7f57\u91cc\u8fbe\u5dde\u5965\u5170\u591a\u5e02\u4e3e\u884c\u7684ASH\u4f1a\u8bae\u4e0a\u5ba3\u4f20ECD\u76f8\u5173\u77e5\u8bc6"},"content":{"rendered":"<p>\u672c\u5468\u672b\uff0c\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\uff08ECDGA\uff09\u7684\u4ee3\u8868\u53c2\u52a0\u4e86\u5728\u4f5b\u7f57\u91cc\u8fbe\u5dde\u5965\u5170\u591a\u5e02\u4e3e\u884c\u7684\u7f8e\u56fd\u8840\u6db2\u5b66\u4f1a\uff08ASH\uff09\u5e74\u4f1a\u2014\u2014\u8fd9\u662f\u5168\u7403\u8840\u6db2\u5b66\u4e13\u4e1a\u4eba\u58eb\u548c\u7f55\u89c1\u75c5\u7814\u7a76\u4eba\u5458\u6700\u91cd\u8981\u7684\u5b66\u672f\u76db\u4f1a\u4e4b\u4e00\u3002.<\/p>\n<p>ECDGA\u8463\u4e8b\u4f1a\u4e3b\u5e2d\u9edb\u5b89\u00b7\u65bd\u83b1\u7eb3\uff08Diane Schriner\uff09\u548c\u5de5\u4f5c\u4eba\u5458\u6770\u7f57\u59c6\u00b7\u4ea8\u68ee\uff08Jerome Henson\uff09\u4f1a\u89c1\u4e86\u6df1\u5ea6\u53c2\u4e0e\u63a8\u8fdb\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u6cbb\u7597\u5de5\u4f5c\u7684\u4e3b\u8981\u533b\u5b66\u4e13\u5bb6\uff0c\u5176\u4e2d\u5305\u62ec\uff1a<\/p>\n<ul>\n<li>\u7f57\u7eb3\u5fb7\u00b7\u9ad8\uff08Ronald Go\uff09\u533b\u5b66\u535a\u58eb\uff0cECDGA\u8463\u4e8b\u4f1a\u6210\u5458<\/li>\n<li>Gaurav Goyal \u533b\u5b66\u535a\u58eb\uff0cECDGA \u533b\u7597\u987e\u95ee\u59d4\u5458\u4f1a\u6210\u5458\uff0c\u4ee5\u53ca 2026 \u5e74\u5728\u963f\u62c9\u5df4\u9a6c\u5dde\u4f2f\u660e\u7ff0\u5e02\u4e3e\u529e\u7684\u201c\u60a3\u8005\u53ca\u5bb6\u5c5e\u805a\u4f1a\u66a8\u533b\u5b66\u7814\u8ba8\u4f1a\u201d\u7684\u4e3b\u6301\u4eba<\/li>\n<li>\u5965\u4ec0\u62c9\u7279\u00b7\u8d6b\u5c14\u4ec0\u79d1\u7ef4\u8328-\u7f57\u5361\uff08Oshrat Hershkovitz-Rokah\uff09\u535a\u58eb\uff0cECDGA\u533b\u5b66\u987e\u95ee\u59d4\u5458\u4f1a\u6210\u5458<\/li>\n<\/ul>\n<p>\u5728\u6574\u4e2a\u4f1a\u8bae\u671f\u95f4\uff0c\u8be5\u56e2\u961f\u4e0e\u4e34\u5e8a\u533b\u751f\u3001\u7814\u7a76\u4eba\u5458\u548c\u884c\u4e1a\u5408\u4f5c\u4f19\u4f34\u8fdb\u884c\u4e86\u4ea4\u6d41\uff0c\u65e8\u5728\u63d0\u9ad8\u4eba\u4eec\u5bf9ECD\u7684\u8ba4\u8bc6\uff0c\u63a2\u8ba8\u5f53\u524d\u5728\u8bca\u65ad\u548c\u6cbb\u7597\u65b9\u9762\u9762\u4e34\u7684\u6311\u6218\uff0c\u5e76\u5f3a\u8c03\u4e86\u6301\u7eed\u6269\u5927\u7814\u7a76\u8303\u56f4\u548c\u63d0\u5347\u4e34\u5e8a\u4e13\u4e1a\u80fd\u529b\u7684\u91cd\u8981\u6027\u3002.<\/p>\n<p>\u201cASH\u4e3a\u6559\u80b2\u548c\u5408\u4f5c\u63d0\u4f9b\u4e86\u4e00\u4e2a\u6781\u5176\u5b9d\u8d35\u7684\u5e73\u53f0\uff0c\u201d\u65bd\u83b1\u7eb3\u8868\u793a\u3002\u201c\u6211\u4eec\u5efa\u7acb\u7684\u6bcf\u4e00\u4efd\u8054\u7cfb\uff0c\u90fd\u6709\u52a9\u4e8e\u786e\u4fdd\u66f4\u591a\u533b\u751f\u80fd\u591f\u8bc6\u522b\u65e9\u671f\u5fc3\u810f\u75c5\uff08ECD\uff09\uff0c\u5e76\u8ba9\u66f4\u591a\u60a3\u8005\u83b7\u5f97\u4ed6\u4eec\u5e94\u5f97\u7684\u53ca\u65f6\u3001\u51c6\u786e\u7684\u6cbb\u7597\u3002\u201d<\/p>\n<p>ECDGA \u5c06\u7ee7\u7eed\u81f4\u529b\u4e8e\u52a0\u5f3a\u4e0e\u533b\u5b66\u754c\u7684\u5408\u4f5c\uff0c\u652f\u6301\u521b\u65b0\u7814\u7a76\uff0c\u5e76\u4e3a\u53d7\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5f71\u54cd\u7684\u4e2a\u4eba\u548c\u5bb6\u5ead\u63d0\u4f9b\u652f\u6301\u3002.<\/p>\n<p>\u6211\u4eec\u5411\u6240\u6709\u57282025\u5e74\u7f8e\u56fd\u8840\u6db2\u5b66\u4f1a\uff08ASH\uff09\u5e74\u4f1a\u4e0a\u52a9\u529b\u63d0\u5347ECD\u8ba4\u77e5\u5ea6\u7684\u4eba\u58eb\u8868\u793a\u8877\u5fc3\u7684\u611f\u8c22\u3002.<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>This weekend, ECDGA Board President Diane Schriner and staff member Jerome Henson had the privilege of meeting with esteemed medical leaders at the American Society of Hematology (ASH) Conference in Orlando, FL.<\/p>\n<p>They connected with:<br \/>\n\u2022\tRonald Go, MD, ECDGA Board Member<\/p>\n<p>\u2022\tGaurav Goyal, MD, ECDGA Medical Advisory Board Member and host of the 2026 Patient &amp; Family Gathering and Medical Symposium in Birmingham, Alabama<\/p>\n<p>\u2022\tOshrat Hershkovitz-Rokah, PhD, member of the ECDGA Medical Advisory Board<\/p>\n<p>Together, they helped raise critical awareness of Erdheim-Chester Disease (ECD) among hematologists and medical professionals from around the world.<\/p>\n<p>Every conversation, every connection, and every shared resource brings us one step closer to improved recognition, diagnosis, and care for those living with ECD.<\/p>\n<p>Thank you to everyone helping amplify the voice of the ECD community! \ud83d\udc9b<\/p>","protected":false},"author":14,"featured_media":109873,"comment_status":"closed","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":[5488,3190,387,2252,376],"class_list":["post-109872","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-ash2025","tag-ecd","tag-ecdga","tag-erdheimchester","tag-raredisease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/109872","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=109872"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/109872\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/109873"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=109872"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=109872"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=109872"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}