{"id":112922,"date":"2026-01-15T08:39:31","date_gmt":"2026-01-15T14:39:31","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=112922"},"modified":"2026-01-15T10:50:27","modified_gmt":"2026-01-15T16:50:27","slug":"ecdga-2025-%e9%80%9a%e8%ae%af","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh\/ecdga-2025-newsletter\/","title":{"rendered":"ECDGA 2025 \u901a\u8baf"},"content":{"rendered":"

\u643a\u624b\u5171\u8fdb<\/strong><\/p>\n

\u6458\u81ea\u201c\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\u201d<\/p>\n

\u968f\u77402025\u5e74\u7684\u5230\u6765\uff0c\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\uff08ECDGA\uff09\u56de\u987e\u4e86\u53c8\u4e00\u4e2a\u5145\u6ee1\u610f\u4e49\u7684\u5e74\u4efd\u2014\u2014\u8fd9\u4e00\u5e74\u91cc\uff0c\u6211\u4eec\u52a0\u5f3a\u4e86\u8054\u7cfb\u3001\u53d6\u5f97\u4e86\u8fdb\u5c55\uff0c\u5e76\u59cb\u7ec8\u5982\u4e00\u5730\u81f4\u529b\u4e8e\u6211\u4eec\u7684\u4f7f\u547d\u3002 \u4ece\u6700\u521d\u4f5c\u4e3a\u62a4\u7406\u4eba\u5458\u7ec4\u6210\u7684\u57fa\u5c42\u7f51\u7edc\uff0c\u5230\u5982\u4eca\u53d1\u5c55\u6210\u4e3a\u652f\u630176\u4e2a\u56fd\u5bb6\u8d85\u8fc71,050\u540d\u60a3\u8005\u53ca\u5176\u5bb6\u5ead\u7684\u5168\u7403\u6027\u975e\u8425\u5229\u7ec4\u7ec7\uff0cECDGA\u59cb\u7ec8\u81f4\u529b\u4e8e\u63d0\u9ad8\u516c\u4f17\u5bf9\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09\u7684\u8ba4\u77e5\uff0c\u5f00\u5c55\u76f8\u5173\u6559\u80b2\u4e0e\u7814\u7a76\uff0c\u5e76\u4e3a\u53d7\u8be5\u75be\u75c5\u5f71\u54cd\u7684\u4eba\u7fa4\u63d0\u4f9b\u652f\u6301\u3002.<\/p>\n

\u6211\u4eec\u7684\u5de5\u4f5c\u690d\u6839\u4e8e\u540c\u60c5\u5fc3\uff0c\u7531\u793e\u533a\u529b\u91cf\u63a8\u52a8\uff0c\u5e76\u4ee5\u4e00\u4e2a\u660e\u786e\u7684\u4f7f\u547d\u4e3a\u6307\u5f15\uff1a\u786e\u4fdd\u6bcf\u4f4d\u4e0e\u8fd9\u79cd\u75be\u75c5\u6297\u4e89\u7684\u4eba\u90fd\u4e0d\u81f3\u4e8e\u5b64\u519b\u594b\u6218\u3002\u65e0\u8bba\u60a8\u662f\u521a\u786e\u8bca\u7684\u60a3\u8005\u3001\u957f\u671f\u652f\u6301\u8005\u3001\u62a4\u7406\u4eba\u5458\u8fd8\u662f\u4e34\u5e8a\u533b\u751f\uff0c\u6211\u4eec\u90fd\u611f\u8c22\u60a8\u53c2\u4e0e\u8fd9\u6bb5\u65c5\u7a0b\u3002.<\/p>\n

\u6e90\u4e8e\u7231\u4e0e\u6bc5\u529b\u7684\u4f20\u627f<\/h2>\n

ECDGA\u7684\u6210\u7acb\u6e90\u4e8e\u4e00\u6bb5\u6781\u5176\u4e2a\u4eba\u5316\u7684\u7ecf\u5386\u3002 2007\u5e74\uff0c\u51ef\u897f\u00b7\u5e03\u9c81\u5c14\uff08Kathy Brewer\uff09\u5728\u7ecf\u5386\u4e86\u591a\u5e74\u672a\u89e3\u7684\u533b\u5b66\u8c1c\u56e2\u540e\uff0c\u75db\u5931\u4e08\u592b\u52a0\u91cc\uff08Gary\uff09\u3002\u76f4\u5230\u4ed6\u53bb\u4e16\u540e\uff0c\u533b\u751f\u624d\u786e\u8bca\u4e3a\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08Erdheim-Chester Disease\uff09\u3002\u8fd9\u6bb5\u75db\u82e6\u7684\u5386\u7a0b\u4fc3\u4f7f\u5979\u7acb\u4e0b\u4e86\u4e00\u4e2a\u627f\u8bfa\u2014\u2014\u81f4\u529b\u4e8e\u5e2e\u52a9\u4ed6\u4eba\u907f\u514d\u7ecf\u5386\u51ef\u897f\u548c\u52a0\u91cc\u66fe\u9762\u4e34\u7684\u5b64\u7acb\u4e0e\u4e0d\u786e\u5b9a\u611f\u3002.<\/p>\n

2008\u5e744\u6708\uff0c\u51ef\u897f\u901a\u8fc7\u7f51\u7edc\u7ed3\u8bc6\u4e86\u53e6\u5916\u4e24\u4f4d\u7167\u62a4\u8005\u3002\u5979\u4eec\u5171\u540c\u7ec4\u7ec7\u4e86\u4e00\u6b21\u5c0f\u578b\u5728\u7ebf\u804a\u5929\u6d3b\u52a8\uff0c\u9762\u5411\u5176\u4ed6\u53d7ECD\u5f71\u54cd\u7684\u4eba\u58eb\u3002\u8fd9\u4e00\u7b80\u5355\u7684\u793e\u533a\u5efa\u8bbe\u4e3e\u63aa\uff0c\u6807\u5fd7\u7740\u4e00\u4e2a\u672a\u6765\u5c06\u53d1\u5c55\u6210\u4e3a\u5168\u7403\u6027\u7ec4\u7ec7\u7684\u5f00\u7aef\u3002 \u5728\u60a3\u8005\u548c\u533b\u751f\u7684\u9f13\u52b1\u4e0b\uff0cECDGA\u4e8e2008\u5e74\u63a8\u51fa\u4e86\u9996\u4e2a\u7f51\u7ad9\uff0c\u5e76\u4e8e2009\u5e74\u6b63\u5f0f\u6210\u4e3a501(c)(3)\u975e\u8425\u5229\u7ec4\u7ec7\u3002.<\/p>\n

\u5982\u4eca\uff0cECDGA\u5df2\u6210\u4e3a\u5168\u7403\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u7684\u751f\u547d\u7ebf\u3002\u51ef\u897f\u7684\u627f\u8bfa\u6f14\u53d8\u6210\u4e86\u4e00\u573a\u8fd0\u52a8\uff0c\u800c\u5979\u534f\u52a9\u521b\u5efa\u7684\u8054\u76df\u81f3\u4eca\u4ecd\u5728\u6bcf\u5929\u6539\u53d8\u7740\u4eba\u4eec\u7684\u751f\u6d3b\u3002.<\/p>\n

\u4ec0\u4e48\u662f\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff1f<\/h2>\n

\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u662f\u4e00\u79cd\u6781\u5176\u7f55\u89c1\u7684\u8840\u6db2\u764c\u75c7\uff0c\u88ab\u5f52\u7c7b\u4e3a\u975e\u6717\u683c\u6c49\u65af\u7ec6\u80de\u7ec4\u7ec7\u7ec6\u80de\u589e\u751f\u75c7\u3002 \u8be5\u75c5\u662f\u7531\u4e00\u79cd\u540d\u4e3a\u7ec4\u7ec7\u7ec6\u80de\u7684\u514d\u75ab\u7cfb\u7edf\u7ec6\u80de\u5f02\u5e38\u589e\u751f\u5f15\u8d77\u7684\uff0c\u8fd9\u4e9b\u7ec6\u80de\u4f1a\u6d78\u6da6\u5668\u5b98\u548c\u7ec4\u7ec7\uff0c\u4ece\u800c\u5f15\u53d1\u708e\u75c7\u3001\u7622\u75d5\u5f62\u6210\u548c\u7ec4\u7ec7\u635f\u4f24\u3002\u8fd9\u4e9b\u7ec4\u7ec7\u7ec6\u80de\u901a\u5e38\u53c2\u4e0e\u4fdd\u62a4\u673a\u4f53\uff0c\u4f46\u5728\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u4e2d\uff0c\u5b83\u4eec\u7684\u884c\u4e3a\u5374\u51fa\u73b0\u4e86\u5f02\u5e38\u3002.<\/p>\n

ECD\u51e0\u4e4e\u53ef\u5f71\u54cd\u4efb\u4f55\u5668\u5b98\u7cfb\u7edf\u3002\u5e38\u89c1\u7684\u53d7\u7d2f\u90e8\u4f4d\u5305\u62ec\u957f\u9aa8\u3001\u80be\u810f\u3001\u5fc3\u810f\u3001\u80ba\u90e8\u548c\u4e2d\u67a2\u795e\u7ecf\u7cfb\u7edf\u3002 \u75c7\u72b6\u53ef\u80fd\u5dee\u5f02\u5f88\u5927\uff0c\u4ece\u5173\u8282\u75bc\u75db\u548c\u75b2\u52b3\u5230\u66f4\u4e25\u91cd\u7684\u5e76\u53d1\u75c7\uff0c\u5982\u80be\u529f\u80fd\u969c\u788d\u3001\u5fc3\u810f\u95ee\u9898\u6216\u795e\u7ecf\u7cfb\u7edf\u75c7\u72b6\u3002\u7531\u4e8e\u8be5\u75c5\u53d1\u75c5\u7387\u4f4e\u4e14\u4e34\u5e8a\u8868\u73b0\u591a\u6837\uff0c\u5e38\u88ab\u8bef\u8bca\u6216\u5ef6\u8bef\u8bca\u65ad\u3002.<\/p>\n

MAPK\u901a\u8def\u4e2d\u57fa\u56e0\u7a81\u53d8\u7684\u53d1\u73b0\uff0c\u5c24\u5176\u662f\u8d85\u8fc7\u534a\u6570ECD\u60a3\u8005\u4e2d\u68c0\u6d4b\u5230\u7684BRAF V600E\u7a81\u53d8\uff0c\u4f7f\u4eba\u4eec\u5bf9\u8be5\u75be\u75c5\u6709\u4e86\u66f4\u6df1\u5165\u7684\u4e86\u89e3\uff0c\u5e76\u63a8\u52a8\u4e86\u9776\u5411\u6cbb\u7597\u7684\u7814\u53d1\u3002\u7136\u800c\uff0c\u8981\u5168\u9762\u4e86\u89e3ECD\u5e76\u6539\u5584\u6240\u6709\u60a3\u8005\u7684\u9884\u540e\uff0c\u4ecd\u9700\u5f00\u5c55\u66f4\u591a\u7814\u7a76\u3002.<\/p>\n

\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\u4e0d\u63d0\u4f9b\u533b\u7597\u5efa\u8bae\u3001\u8bca\u65ad\u6216\u6cbb\u7597\u3002\u6240\u6709\u5185\u5bb9\u4ec5\u4f9b\u53c2\u8003\u3002\u5982\u6709\u533b\u7597\u95ee\u9898\uff0c\u8bf7\u54a8\u8be2\u533b\u7597\u4fdd\u5065\u4e13\u4e1a\u4eba\u5458\u3002.<\/p>\n

\u63a8\u52a8\u53d8\u9769\u7684\u7814\u7a76<\/h2>\n

\u7814\u7a76\u59cb\u7ec8\u662fECDGA\u4f7f\u547d\u7684\u57fa\u77f3\u4e4b\u4e00\u3002 \u81ea\u6210\u7acb\u4ee5\u6765\uff0c\u672c\u8054\u76df\u5df2\u8d44\u52a9\u4e8617\u4e2a\u7814\u7a76\u9879\u76ee\uff0c\u5e76\u5efa\u7acb\u4e86\u60a3\u8005\u767b\u8bb0\u7cfb\u7edf\u4ee5\u534f\u52a9\u5f53\u524d\u53ca\u672a\u6765\u7684\u7814\u7a76\u5de5\u4f5c\u3002\u8fd9\u4e9b\u4e3e\u63aa\u5171\u540c\u4e3aECD\u7814\u7a76\u8d21\u732e\u4e86\u8d85\u8fc7$1.3\u767e\u4e07\u7684\u8d44\u91d1\uff0c\u4ece\u800c\u63a8\u52a8\u4e86\u5bf9\u8be5\u75be\u75c5\u57fa\u56e0\u7a81\u53d8\u673a\u5236\u7684\u6df1\u5165\u7406\u89e3\uff0c\u6539\u8fdb\u4e86\u8bca\u65ad\u65b9\u6cd5\uff0c\u5e76\u4e3a\u9776\u5411\u6cbb\u7597\u7684\u4e34\u5e8a\u8bd5\u9a8c\u63d0\u4f9b\u4e86\u91cd\u8981\u4f9d\u636e\u3002.<\/p>\n

\u8fd9\u4e00\u8fdb\u5c55\u76f4\u63a5\u5f97\u76ca\u4e8e\u6177\u6168\u7684\u6350\u8d60\u3001\u4e0e\u9876\u5c16\u7814\u7a76\u673a\u6784\u7684\u5408\u4f5c\uff0c\u4ee5\u53ca\u5404\u65b9\u5bf9\u63a8\u8fdb\u533b\u7597\u62a4\u7406\u7684\u5171\u540c\u627f\u8bfa\u3002\u8fd9\u4e9b\u52aa\u529b\u6240\u4ea7\u751f\u7684\u5f71\u54cd\uff0c\u4f53\u73b0\u5728\u65e9\u671f\u513f\u7ae5\u53d1\u80b2\uff08ECD\uff09\u9886\u57df\u4f17\u591a\u60a3\u8005\u751f\u6d3b\u8d28\u91cf\u7684\u63d0\u5347\u548c\u6cbb\u7597\u6548\u679c\u7684\u6539\u5584\u4e0a\u3002.<\/p>\n

\u7136\u800c\uff0c\u8fd9\u6bb5\u5f81\u7a0b\u8fdc\u672a\u7ed3\u675f\u3002\u5173\u4e8eECD\u7684\u53d1\u75c5\u673a\u5236\u3001\u957f\u671f\u6cbb\u7597\u6548\u679c\u4ee5\u53ca\u6700\u4f73\u62a4\u7406\u7b56\u7565\uff0c\u4ecd\u6709\u8bb8\u591a\u95ee\u9898\u6709\u5f85\u89e3\u7b54\u3002ECDGA\u5c06\u7ee7\u7eed\u81f4\u529b\u4e8e\u4e0e\u5168\u7403\u5404\u5730\u7684\u533b\u7597\u4e2d\u5fc3\u548c\u533b\u751f\u5408\u4f5c\uff0c\u652f\u6301\u65b0\u5f00\u5c55\u548c\u6b63\u5728\u8fdb\u884c\u7684\u7814\u7a76\u5de5\u4f5c\u3002.<\/p>\n

\u4fc3\u8fdb\u77e5\u8bc6\u79ef\u7d2f\u4e0e\u793e\u533a\u5efa\u8bbe\u7684\u6d3b\u52a8<\/h2>\n

ECDGA \u51dd\u805a\u793e\u533a\u7684\u6700\u5177\u610f\u4e49\u7684\u65b9\u5f0f\u4e4b\u4e00\uff0c\u5c31\u662f\u901a\u8fc7\u6211\u4eec\u6bcf\u5e74\u4e3e\u529e\u7684\u6d3b\u52a8\u3002\u6bcf\u5e74\uff0c\u6211\u4eec\u90fd\u4f1a\u8fde\u7eed\u4e3e\u529e\u4e24\u573a\u6d3b\u52a8\uff0c\u4e3a\u60a3\u8005\u3001\u5bb6\u5c5e\u548c\u533b\u7597\u4e13\u4e1a\u4eba\u5458\u63d0\u4f9b\u670d\u52a1\u3002.<\/p>\n

\u9996\u5148\u662f\u6211\u4eec\u7684\u201c\u60a3\u8005\u53ca\u5bb6\u5c5e\u805a\u4f1a\u201d\uff0c\u8fd9\u662f\u4e00\u573a\u4e3a\u671f\u4e00\u5929\u7684\u6d3b\u52a8\uff0c\u65e8\u5728\u4e3a\u60a3\u6709\u65e9\u671f\u513f\u7ae5\u53d1\u80b2\u969c\u788d\uff08ECD\uff09\u7684\u4eba\u58eb\u53ca\u5176\u7167\u62a4\u8005\u63d0\u4f9b\u652f\u6301\u548c\u6559\u80b2\u3002\u8be5\u6d3b\u52a8\u4e3a\u60a3\u8005\u53ca\u5bb6\u5c5e\u63d0\u4f9b\u4e86\u76f4\u63a5\u8046\u542cECD\u9886\u57df\u533b\u5b66\u4e13\u5bb6\u8bb2\u89e3\u3001\u63d0\u51fa\u95ee\u9898\u5e76\u5206\u4eab\u7ecf\u9a8c\u7684\u673a\u4f1a\u3002\u8fd9\u662f\u5efa\u7acb\u8054\u7cfb\u3001\u5b66\u4e60\u77e5\u8bc6\u5e76\u589e\u5f3a\u81ea\u4fe1\u7684\u5b9d\u8d35\u65f6\u523b\u3002 \u53c2\u4e0e\u8005\u901a\u5e38\u5728\u6d3b\u52a8\u7ed3\u675f\u540e\u91cd\u71c3\u5e0c\u671b\uff0c\u5e76\u5bf9\u81ea\u8eab\u75c5\u60c5\u6709\u4e86\u66f4\u6df1\u5165\u7684\u4e86\u89e3\u3002.<\/p>\n

\u7d27\u968f\u6b64\u6b21\u6d3b\u52a8\u4e4b\u540e\u7684\u662fECD\u533b\u5b66\u7814\u8ba8\u4f1a\uff0c\u8fd9\u662f\u4e00\u573a\u9762\u5411\u533b\u7597\u4fdd\u5065\u4e13\u4e1a\u4eba\u5458\u548c\u7814\u7a76\u4eba\u5458\u7684\u5e74\u5ea6\u4f1a\u8bae\uff0c\u91cd\u70b9\u5173\u6ce8ECD\u9886\u57df\u3002\u8be5\u7814\u8ba8\u4f1a\u662f\u552f\u4e00\u4e13\u95e8\u9488\u5bf9ECD\u7684\u56fd\u9645\u4f1a\u8bae\uff0c\u6c47\u805a\u4e86\u591a\u5b66\u79d1\u4e13\u5bb6\uff0c\u5171\u540c\u63a2\u8ba8\u6700\u65b0\u7684\u79d1\u5b66\u53d1\u73b0\u3001\u4e34\u5e8a\u65b9\u6cd5\u53ca\u7814\u7a76\u8fdb\u5c55\u3002 \u5728\u6b64\u8fdb\u884c\u7684\u77e5\u8bc6\u4ea4\u6d41\u4e0e\u5408\u4f5c\uff0c\u5bf9\u4e8e\u6539\u5584\u60a3\u8005\u62a4\u7406\u548c\u63a8\u52a8\u8be5\u9886\u57df\u53d1\u5c55\u81f3\u5173\u91cd\u8981\u3002.<\/p>\n

\u9664\u4e86\u8fd9\u4e24\u573a\u6d3b\u52a8\u5916\uff0c\u8fd8\u4e13\u95e8\u4e3aECD\u62a4\u7406\u4e2d\u5fc3\u7684\u533b\u751f\u53ca\u5176\u56e2\u961f\u4e3e\u529e\u4e86\u7b2c\u4e09\u573a\u4f1a\u8bae\u3002\u6b64\u6b21\u4f1a\u8bae\u65e8\u5728\u4fc3\u8fdb\u5404\u62a4\u7406\u4e2d\u5fc3\u4e4b\u95f4\u7684\u5408\u4f5c\uff0c\u52a0\u5f3a\u673a\u6784\u95f4\u7684\u8054\u7cfb\uff0c\u5e76\u5e2e\u52a9\u786e\u4fdd\u60a3\u8005\u80fd\u591f\u5728\u79bb\u5bb6\u66f4\u8fd1\u7684\u5730\u65b9\u83b7\u5f97\u4e13\u4e1a\u62a4\u7406\u3002.<\/p>\n

\u8fd9\u4e9b\u6d3b\u52a8\u4e0d\u4ec5\u4ec5\u662f\u4f1a\u8bae\u2014\u2014\u5b83\u4eec\u662f\u79d1\u5b66\u4e0e\u4ec1\u7231\u4e4b\u95f4\u7684\u6865\u6881\uff0c\u901a\u8fc7\u5171\u540c\u7684\u76ee\u6807\u5c06\u4eba\u4eec\u8054\u7cfb\u5728\u4e00\u8d77\u3002.<\/p>\n

\u63d0\u9ad8\u8ba4\u8bc6\uff0c\u52a0\u5feb\u8bca\u65ad<\/h2>\n

\u5bf9\u4e8e\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\uff08ECD\uff09\u60a3\u8005\u800c\u8a00\uff0c\u6700\u5927\u7684\u6311\u6218\u4e4b\u4e00\u5c31\u662f\u8bca\u65ad\u5ef6\u8bef\u6216\u8bef\u8bca\u3002\u7531\u4e8e\u8be5\u75c5\u7684\u4e34\u5e8a\u8868\u73b0\u4e0e\u8bb8\u591a\u5176\u4ed6\u75be\u75c5\u76f8\u4f3c\uff0c\u60a3\u8005\u5f80\u5f80\u9700\u8981\u6570\u5e74\u65f6\u95f4\u624d\u80fd\u83b7\u5f97\u6b63\u786e\u7684\u8bca\u65ad\u3002\u63d0\u9ad8\u516c\u4f17\u548c\u533b\u7597\u4fdd\u5065\u63d0\u4f9b\u8005\u7684\u8ba4\u77e5\uff0c\u5bf9\u4e8e\u7f29\u77ed\u8fd9\u4e00\u8bca\u65ad\u8fc7\u7a0b\u5e76\u6539\u5584\u9884\u540e\u81f3\u5173\u91cd\u8981\u3002.<\/p>\n

2025\u5e74\uff0cECDGA\u5c06\u7ee7\u7eed\u901a\u8fc7\u6559\u80b2\u5ba3\u4f20\u6d3b\u52a8\u3001\u793e\u4ea4\u5a92\u4f53\u63a8\u5e7f\u4ee5\u53ca\u5411\u533b\u7597\u670d\u52a1\u63d0\u4f9b\u8005\u5206\u53d1\u6700\u65b0\u8d44\u6599\u7b49\u65b9\u5f0f\uff0c\u8fdb\u4e00\u6b65\u6269\u5927\u516c\u4f17\u8ba4\u77e5\u3002\u6b64\u5916\uff0c\u6211\u4eec\u8fd8\u5c06\u542f\u52a8\u60a3\u8005\u6545\u4e8b\u5206\u4eab\u8ba1\u5212\uff0c\u4ee5\u51f8\u663eECD\u5bf9\u4e2a\u4eba\u751f\u6d3b\u7684\u5f71\u54cd\uff0c\u5e76\u4e3a\u60a3\u6709\u8fd9\u79cd\u7f55\u89c1\u75c5\u7684\u60a3\u8005\u63d0\u4f9b\u53d1\u58f0\u6e20\u9053\u3002.<\/p>\n

\u6bcf\u6b21\u5173\u4e8e\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u7684\u8ba8\u8bba\uff0c\u90fd\u662f\u671d\u7740\u66f4\u65e9\u8bca\u65ad\u3001\u66f4\u597d\u7167\u62a4\u4ee5\u53ca\u63d0\u9ad8\u793e\u533a\u5173\u6ce8\u5ea6\u8fc8\u51fa\u7684\u4e00\u6b65\u3002.<\/p>\n

\u6211\u4eec\u7684\u5168\u7403\u5f71\u54cd\u529b<\/h2>\n

\u81ea\u6210\u7acb\u4ee5\u6765\uff0cECDGA\u7684\u5f71\u54cd\u529b\u5df2\u663e\u8457\u6269\u5927\u3002\u4eca\u5929\uff0c\u6211\u4eec\u81ea\u8c6a\u5730\u5206\u4eab\u4ee5\u4e0b\u91cc\u7a0b\u7891\uff1a<\/p>\n

    \n
  • \u4e3a\u5168\u7403\u8d85\u8fc71,050\u540d\u60a3\u8005\u53ca\u5176\u5bb6\u5c5e\u63d0\u4f9b\u652f\u6301<\/li>\n
  • \u572876\u4e2a\u56fd\u5bb6\u8bbe\u6709\u4ee3\u8868\u5904<\/li>\n
  • \u5168\u740341\u5bb6\u65e9\u671f\u513f\u7ae5\u53d1\u5c55\uff08ECD\uff09\u7167\u62a4\u4e2d\u5fc3\u83b7\u8ba4\u8bc1<\/li>\n
  • \u5bf917\u4e2a\u79d1\u7814\u9879\u76ee\u7684\u8d44\u52a9<\/li>\n
  • \u5df2\u62e8\u6b3e\u8d85\u8fc7$130\u4e07\u7528\u4e8e\u7814\u7a76\u548c\u652f\u6301\u9879\u76ee<\/li>\n<\/ul>\n

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    \u6000\u7740\u611f\u6069\u4e4b\u5fc3\u548c\u660e\u786e\u76ee\u6807\u5c55\u671b\u672a\u6765<\/h2>\n

    \u968f\u77402025\u5e74\u7684\u63a8\u8fdb\uff0c\u6211\u4eec\u4f9d\u7136\u5bf9\u6bcf\u4e00\u4f4d\u652f\u6301ECDGA\u4f7f\u547d\u7684\u4eba\u5fc3\u6000\u611f\u6fc0\u3002\u4f60\u4eec\u7684\u6177\u6168\u3001\u65f6\u95f4\u548c\u5173\u6000\uff0c\u63a8\u52a8\u4e86\u6211\u4eec\u53d6\u5f97\u7684\u8fdb\u5c55\uff0c\u4e5f\u6ecb\u517b\u4e86\u6211\u4eec\u6301\u7eed\u4f20\u9012\u7684\u5e0c\u671b\u3002.<\/p>\n

    \u65e0\u8bba\u60a8\u662f\u6350\u6b3e\u3001\u5949\u732e\u65f6\u95f4\u3001\u53c2\u4e0e\u652f\u6301\u6027\u804a\u5929\uff0c\u8fd8\u662f\u4ec5\u4ec5\u5e2e\u52a9\u63d0\u9ad8\u516c\u4f17\u610f\u8bc6\uff0c\u60a8\u90fd\u662f\u8fd9\u573a\u6b63\u5728\u5e26\u6765\u5207\u5b9e\u800c\u6301\u4e45\u6539\u53d8\u7684\u8fd0\u52a8\u4e2d\u7684\u4e00\u5458\u3002.<\/p>\n

    \u6211\u4eec\u5c06\u643a\u624b\u5e76\u80a9\uff0c\u7ee7\u7eed\u4e3a\u5bfb\u627e\u7b54\u6848\u3001\u5bfb\u6c42\u6cbb\u7597\u65b9\u6cd5\u800c\u594b\u6597\uff0c\u5e76\u4e3a\u4e00\u4e2aECD\u4e0d\u4ec5\u53ef\u6cbb\u7597\u3001\u800c\u4e14\u53ef\u6cbb\u6108\u7684\u672a\u6765\u800c\u594b\u6597\u3002.<\/p>\n

    \u611f\u8c22\u60a8\u966a\u4f34\u6211\u4eec\u8d70\u8fc7\u8fd9\u6bb5\u65c5\u7a0b\u3002\u6211\u4eec\u671f\u5f85\u5728\u672a\u6765\u4e00\u5e74\u91cc\u4e0e\u60a8\u643a\u624b\u5171\u521b\u4f73\u7ee9\u3002.<\/p>\n

    \u8c28\u81f4\u4ee5\u8bda\u631a\u7684\u8c22\u610f\uff0c,
    \n\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df
    \n\u8def\u6613\u65af\u5b89\u90a3\u5dde\u5fb7\u91cc\u5fb7\u5c14<\/p>\n

    \u514d\u8d23\u58f0\u660e\uff1a\u57c3\u5c14\u5fb7\u6d77\u59c6-\u5207\u65af\u7279\u75c5\u5168\u7403\u8054\u76df\uff08ECDGA\uff09\u4e0d\u63d0\u4f9b\u533b\u7597\u5efa\u8bae\u3001\u8bca\u65ad\u6216\u6cbb\u7597\u3002\u6240\u6709\u5185\u5bb9\u4ec5\u4f9b\u53c2\u8003\u3002\u5982\u6709\u533b\u7597\u95ee\u9898\uff0c\u8bf7\u54a8\u8be2\u533b\u7597\u4fdd\u5065\u4e13\u4e1a\u4eba\u5458\u3002.<\/p>","protected":false},"excerpt":{"rendered":"

    Together, We Move Forward From the Erdheim-Chester Disease Global Alliance As we step into 2025, the Erdheim-Chester Disease Global Alliance (ECDGA) reflects on another meaningful year of connection, progress, and […]<\/p>\n","protected":false},"author":20,"featured_media":112935,"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":[1],"tags":[5598,5324,5601,387,5317,5602,102,5597,135,4565,5599,116,82,52,5600],"class_list":["post-112922","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-annual-update","tag-braf-mutation","tag-ecd-research","tag-ecdga","tag-erdheim-chester-disease","tag-global-health","tag-histiocytosis","tag-medical-research","tag-medical-symposium","tag-nonprofit","tag-patient-advocacy","tag-patient-support","tag-rare-cancer","tag-rare-disease","tag-rare-disease-community"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/112922","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=112922"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/posts\/112922\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media\/112935"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/media?parent=112922"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/categories?post=112922"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh\/wp-json\/wp\/v2\/tags?post=112922"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}