{"id":51159,"date":"2019-03-10T15:51:11","date_gmt":"2019-03-10T20:51:11","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/%e5%82%b3%e6%92%ad%e8%b3%87%e8%a8%8a\/"},"modified":"2026-05-05T22:19:00","modified_gmt":"2026-05-06T03:19:00","slug":"%e5%82%b3%e6%92%ad%e8%b3%87%e8%a8%8a","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/zh-hant\/%e5%82%b3%e6%92%ad%e8%b3%87%e8%a8%8a\/","title":{"rendered":"\u50b3\u64ad\u8cc7\u8a0a"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png&#8221; background_position=&#8221;bottom_center&#8221; background_vertical_offset=&#8221;20%&#8221; custom_padding=&#8221;0px||0px||true|false&#8221; background_last_edited=&#8221;on|desktop&#8221; background_position_tablet=&#8221;bottom_right&#8221; background_position_phone=&#8221;center_right&#8221; global_module=&#8221;28071&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_dmb_breadcrumbs _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; body_text_color=&#8221;#FFFFFF&#8221; body_font_size=&#8221;12px&#8221; link_text_color=&#8221;#35A4BB&#8221; custom_margin=&#8221;||5px||false|false&#8221; custom_padding=&#8221;||0px||false|false&#8221; body_font_size_tablet=&#8221;12px&#8221; body_font_size_phone=&#8221;10px&#8221; body_font_size_last_edited=&#8221;on|desktop&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_dmb_breadcrumbs][et_pb_heading title=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@&#8221; _builder_version=&#8221;4.27.4&#8243; _dynamic_attributes=&#8221;title&#8221; _module_preset=&#8221;default&#8221; title_font=&#8221;&#8211;et_global_heading_font|300|||||||&#8221; title_text_color=&#8221;#FFFFFF&#8221; title_font_size=&#8221;40px&#8221; custom_margin=&#8221;||3px|||&#8221; title_font_size_tablet=&#8221;&#8221; title_font_size_phone=&#8221;25px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_heading][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/zh-hant\/%e8%81%af%e7%b9%ab%e6%88%91%e5%80%91\/&#8221; button_text=&#8221;\u806f\u7e6b\u6211\u5011&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;15px&#8221; button_text_color=&#8221;#C02E43&#8243; button_bg_color=&#8221;rgba(10,22,64,0.53)&#8221; button_border_width=&#8221;0px&#8221; button_icon=&#8221;&#xe60f;||divi||400&#8243; button_icon_color=&#8221;#C02E43&#8243; button_icon_placement=&#8221;left&#8221; button_on_hover=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; filter_opacity__hover_enabled=&#8221;on|hover&#8221; filter_opacity__hover=&#8221;70%&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;section&#8221; _builder_version=&#8221;4.16&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text admin_label=&#8221;Text&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; custom_margin=&#8221;||14px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2><strong>\u52a0\u5165 ECD \u5168\u7403\u806f\u76df\u548c\u6211\u5011\u6210\u5343\u4e0a\u842c\u7684\u793e\u5340\u652f\u63f4\u8005\uff0c\u5411\u5176\u4ed6\u4eba\u5ba3\u50b3 Erdheim-Chester \u75c5\uff01 <\/strong><\/h2>\n<p>\u6211\u5011\u76f8\u4fe1\uff0c\u63d0\u9ad8\u516c\u773e\uff0c\u5c24\u5176\u662f\u91ab\u7642\u5c08\u696d\u4eba\u54e1\u7684\u610f\u8b58\uff0c\u5c0d\u65bc\u65e9\u671f\u8a3a\u65b7\u548c\u7279\u6b8a\u8b77\u7406\u81f3\u95dc\u91cd\u8981\u3002<\/p>\n<p>\u611f\u8b1d\u60a8\u52aa\u529b\u5f15\u8d77\u4eba\u5011\u5c0d Erdheim-Chester \u75c5\u7684\u95dc\u6ce8\uff0c\u4ee5\u4fbf\u5c0d\u91ab\u751f\u9032\u884c\u66f4\u591a\u6559\u80b2\uff0c\u70ba\u7814\u7a76\u63d0\u4f9b\u66f4\u591a\u8cc7\u91d1\uff0c\u4f75\u70ba\u6230\u9b25\u7684\u5bb6\u5ead\u5e36\u4f86\u66f4\u591a\u5e0c\u671b\uff01\u6211\u5011\u611f\u8b1d\u60a8\u81f4\u529b\u65bc\u5e6b\u52a9\u9019\u4e9b\u60a3\u8005\u53ca\u5176\u5bb6\u4eba\u627e\u5230\u5e0c\u671b\uff01 <\/p>\n<p>&nbsp;<\/p>\n<h2 style=\"text-align: center;\">\u6211\u5011\u53ef\u4ee5\u4e00\u8d77 #END<span style=\"color: #008080;\">ECD<\/span>\uff01<\/h2>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=&#8221;3_4,1_4&#8243; make_equal=&#8221;on&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;3_4&#8243; module_class=&#8221;ds-vertical-align&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;]<em><strong>\u6210\u70ba ECD \u793e\u7fa4\u5ba3\u5c0e\u5927\u4f7f<\/strong><\/em><br \/>\nECD \u793e\u7fa4\u5ba3\u5c0e\u5927\u4f7f\u662f\u627f\u8afe\u5728\u60a8\u6240\u5728\u7684\u5730\u5340\u63d0\u5347\u8a8d\u77e5\u7684\u652f\u6301\u8005\uff0c\u5c31\u9019\u9ebc\u7c21\u55ae\uff01\u9019\u53ef\u4ee5\u5305\u542b\u4efb\u4f55\u80fd\u5c07 Erdheim-Chester \u75be\u75c5\u8cc7\u8a0a\u5e36\u7d66\u53ef\u80fd\u4e0d\u719f\u6089\u6b64\u75be\u75c5\u4eba\u58eb\u7684\u6d3b\u52d5\u3002\u60a8\u53ef\u4ee5\u5411\u91ab\u7642\u5c08\u696d\u4eba\u54e1\u53ca\u5176\u4ed6\u53ef\u80fd\u6709\u8208\u8da3\u6216\u61c9\u8a72\u4e86\u89e3 ECD \u7684\u4eba\u58eb\u767c\u653e ECD \u5ba3\u50b3\u624b\u518a\u3002[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/zh-hant\/%e7%b4%a2%e5%8f%96%e5%ae%a3%e5%82%b3%e5%86%8a\/&#8221; button_text=&#8221;\u5728\u6b64\u53d6\u5f97\u60a8\u7684\u5ba3\u50b3\u624b\u518a&#8221; _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; hover_enabled=&#8221;0&#8243; global_colors_info=&#8221;{}&#8221; sticky_enabled=&#8221;0&#8243;][\/et_pb_button][\/et_pb_column][et_pb_column type=&#8221;1_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_image src=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/ECD-Champion-X-Background-300&#215;300-1.png&#8221; title_text=&#8221;ECD-\u80cc\u666f-300&#215;300&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row admin_label=&#8221;\u6392&#8221; _builder_version=&#8221;4.16&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h5><em>\u8b93\u60a8\u7684\u793e\u5340\u4e5f\u53c3\u8207\u9032\u4f86\uff01<\/em><\/h5>\n<ul>\n<li><strong>\u5ead\u9662\u6a19\u8a8c <\/strong>\u2013 \u8981\u6c42\u5c07\u5716\u5f62\u5e36\u5230\u7576\u5730\u6216\u5728\u7dda\u5370\u5237\u5e97\uff0c\u8b93\u60a8\u7684\u5bb6\u4eba\u548c\u670b\u53cb\u5c07\u5b83\u5011\u50b3\u64ad\u5230\u4ed6\u5011\u7684\u793e\u5340\uff01<\/li>\n<li><strong>\u8272\u5e36<\/strong> \u2013 \u5728\u7dda\u6216\u5728\u7576\u5730\u7684\u5de5\u85dd\u54c1\u5e97\u627e\u5230\u6211\u5011\u7684\u6591\u99ac\u7d0b\u8272\u5e36\u3002\u70ba\u60a8\u7684\u8b77\u7406\u5718\u968a\u3001\u670b\u53cb\u3001\u9130\u5c45\u6216\u540c\u4e8b\u88fd\u4f5c\u610f\u8b58\u7dde\u5e36\u7ffb\u9818\u5225\u91dd\uff0c\u662f\u8207\u60a8\u7684\u540c\u9f61\u4eba\u5206\u4eab\u4e00\u4e9b\u6771\u897f\u4ee5\u5ba3\u50b3 ECD\u7684\u7c21\u55ae\u65b9\u6cd5\u3002\u5982\u679c\u4f60\u627e\u5230\u5927\u7d72\u5e36\uff0c\u9019\u4e9b\u5728\u4f60\u7684\u9662\u5b50\u6a19\u8a8c\u4e0a\u6548\u679c\u5f88\u597d\uff01  <\/li>\n<li>\u8207\u7576\u5730\u65b0\u805e<strong>\u5206\u4eab\u60a8<\/strong>\u8207 ECD \u7684\u751f\u6d3b\u6545\u4e8b \u2013 \u60a8\u7684\u65b0\u805e\u5a92\u9ad4\u5c07\u662f\u8b93\u5927\u773e\u77ad\u89e3 ECD \u7684\u91cd\u8981\u8cc7\u6e90\u3002\u89aa\u81ea\u6253\u96fb\u8a71\u6216\u5f88\u5feb\u8a2a\u554f\u5de5\u4f5c\u5ba4\u53ef\u4ee5\u5e6b\u52a9\u60a8\u7372\u5f97 9 \u6708\u7684\u73fe\u5834\u76f4\u64ad &#8211; \u7d66\u60a8\u5145\u8db3\u7684\u6e96\u5099\u6642\u9593\uff01 <\/li>\n<\/ul>\n<h3><strong><img loading=\"lazy\" decoding=\"async\" class=\"alignright size-thumbnail wp-image-20255\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/07\/super-shirt-150x150.jpg\" alt=\"\" width=\"150\" height=\"150\"><\/strong><\/h3>\n<h5><em>\u610f\u8b58\u88dd\u5099<\/em><\/h5>\n<p><a href=\"https:\/\/www.bonfire.com\/event\/ecd-support-squad\/?eType=EmailBlastContent&amp;eId=e5c90fc5-2da7-40d0-98b7-6e3085fed033\" target=\"_blank\" rel=\"noopener\"><strong>\u5165\u624b\u65b0\u7684 ECD Super Support Squad \u896f\u886b\uff01  <\/strong><br \/><\/a>\u5f9e\u591a\u7a2e\u6a23\u5f0f\u548c\u984f\u8272\u4e2d\u9032\u884c\u9078\u64c7\u3002\u896f\u886b\u92b7\u552e\u7684\u5229\u6f64\u6b78 ECDGA \u6240\u6709\uff01\u63d0\u4f9b\u570b\u969b\u904b\u8f38\u3002\u63d0\u793a\uff1a\u6700\u597d\u5728\u516c\u958b\u6d3b\u52d5\u671f\u9593\u8cfc\u8cb7\u88dd\u5099\uff0c\u8acb\u806f\u7e6b\u6211\u5011\u7684\u5718\u968a\u4e86\u89e3\u8a73\u60c5\u3002   <\/p>\n<p>\u5728\u6b64\u8655\u8a2a\u554f\u6211\u5011\u7684 T \u6064\u5e97\uff1a <a href=\"https:\/\/www.bonfire.com\/store\/ecd-global-alliance\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.bonfire.com\/store\/ecd-global-alliance\/<\/a><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2019\/03\/t-shirt.jpg\">\u3002<\/a><\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3><strong>\u7f55\u898b\u75c5\u65e5  <\/strong><\/h3>\n<p>\u8a72\u793e\u5340\u9084\u5728 2 \u6708\u7684\u6700\u5f8c\u4e00\u5929\u53c3\u52a0\u4e00\u5e74\u4e00\u5ea6\u7684\u7f55\u898b\u75c5\u65e5\u3002\u60a8\u53ef\u4ee5\u5728\u9019\u4e9b\u6642\u671f\u6216\u4e00\u5e74\u4e2d\u7684\u4efb\u4f55\u6642\u5019\u901a\u904e\u50b3\u64ad\u5c0d\u4e16\u754c\u5404\u5730 Erdheim-Chester \u75c5\u5bb6\u5ead\u7684\u8a8d\u8b58\u4e26\u7372\u5f97\u652f\u63f4\u4f86\u7522\u751f\u5168\u7403\u5f71\u97ff\u3002\u7f55\u898b\u75c5\u65e5\u5728\u6bcf\u5e74 2 \u6708\u7684\u6700\u5f8c\u4e00\u5929\u8209\u884c\u3002\u7f55\u898b\u75c5\u65e5\u7684\u4e3b\u8981\u76ee\u6a19\u662f\u63d0\u9ad8\u516c\u773e\u548c\u6c7a\u7b56\u8005\u5c0d\u7f55\u898b\u75c5\u53ca\u5176\u5c0d\u60a3\u8005\u751f\u6d3b\u5f71\u97ff\u7684\u8a8d\u8b58\u3002   <\/p>\n<p>\u8a72\u6d3b\u52d5\u4e3b\u8981\u91dd\u5c0d\u516c\u773e\uff0c\u9084\u65e8\u5728\u63d0\u9ad8\u653f\u7b56\u5236\u5b9a\u8005\u3001\u516c\u5171\u6a5f\u69cb\u3001\u884c\u696d\u4ee3\u8868\u3001\u7814\u7a76\u4eba\u54e1\u3001\u885b\u751f\u5c08\u696d\u4eba\u54e1\u4ee5\u53ca\u4efb\u4f55\u5c0d\u7f55\u898b\u75c5\u771f\u6b63\u611f\u8208\u8da3\u7684\u4eba\u7684\u8a8d\u8b58\u3002<\/p>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3><strong>\u5982\u4f55\u53c3\u8207<\/strong><\/h3>\n<p>\u60a8\u53ef\u4ee5\u505a\u4e9b\u4ec0\u9ebc\u4f86\u63d0\u9ad8\u610f\u8b58\uff1f\u7121\u8ad6\u60a8\u9078\u64c7\u6211\u5011\u7684\u4e00\u9805\u9084\u662f\u5168\u90e8\u5efa\u8b70\uff0c\u90fd\u4e0d\u8981\u7b49\u5f85\u5176\u4ed6\u4eba\u4f86\u63d0\u9ad8\u610f\u8b58\u3002\u5982\u679c\u60a8\u95dc\u5fc3\u60a3\u6709 Erdheim-Chester \u75c5\u7684\u4eba\uff0c\u90a3\u9ebc\u60a8\u5c31\u662f\u50b3\u64ad\u9019\u500b\u8a5e\u7684\u6700\u4f73\u5ba3\u5c0e\u8005\u3002\u901a\u904e\u5206\u4eab\u60a8\u8207 ECD \u7684\u5f37\u5927\u7d93\u9a57\u548c\u806f\u7e6b\uff0c\u60a8\u53ef\u4ee5\u8aac\u660e\u60a3\u8005\u548c\u5bb6\u5ead\u5275\u9020\u66f4\u5149\u660e\u7684\u672a\u4f86\u3002   <\/p>\n<p>&nbsp;<\/p>\n<h4>\u5206\u4eab\u60a8\u7684\u6545\u4e8b<\/h4>\n<ul>\n<li>\u70ba <a href=\"https:\/\/globalgenes.org\/category\/insights\/patient_stories\/\" target=\"_blank\" rel=\"noopener noreferrer\">RareDaily<\/a>\u7b49\u7f55\u898b\u75c5\u5ba3\u5c0e\u51fa\u7248\u7269\u5beb\u4e00\u7bc7\u6587\u7ae0\u3002<\/li>\n<li>\u5beb\u4fe1\u7d66\u60a8\u7576\u5730\u5831\u7d19\u3001\u5ee3\u64ad\u6216\u96fb\u8996\u53f0\u7684\u7de8\u8f2f\uff0c\u77ad\u89e3 ECD \u5c0d\u60a8\u548c\u60a8\u7684\u5bb6\u4eba\u6709\u4f55\u5f71\u97ff\u3002<\/li>\n<li>\u5c07\u60a8\u7684\u9ad4\u9a57\u5206\u4eab\u7d66\u670b\u53cb\u3001\u5bb6\u4eba\u548c\u793e\u5340\u6210\u54e1\u3002<\/li>\n<li>\u70baYouTube\u6216\u793e\u4ea4\u7db2\u7ad9\u88fd\u4f5c\u8996\u983b\uff0c\u544a\u8a34\u5168\u4e16\u754c\u70ba\u4ec0\u9ebc ECD \u610f\u8b58\u5c0d\u60a8\u5f88\u91cd\u8981\u3002<\/li>\n<li>\u4f7f\u7528\u60a8\u7684\u96fb\u5b50\u90f5\u4ef6\u7c3d\u540d\u4f5c\u70ba\u8d85\u9023\u7d50\u5230\u500b\u4eba\u535a\u5ba2\u6216 ECDGA \u7db2\u7ad9\u7684\u6a5f\u6703\uff0c\u4ee5\u589e\u52a0\u60a8\u7684\u7db2\u8def\u5c0d ECD \u7684\u77ad\u89e3\u3002<\/li>\n<li><a href=\"https:\/\/www.erdheim-chester.org\/news-printed-stories\/\">\u5728\u6b64\u8655<\/a>\u67e5\u627e\u5176\u4ed6 ECD \u60a3\u8005\u6545\u4e8b\u3002<\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||6px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h4>\u7372\u53d6\u793e\u4ea4<\/h4>\n<p>[\/et_pb_text][et_pb_social_media_follow _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||13px|||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_social_media_follow_network social_network=&#8221;facebook&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#3b5998&#8243; global_colors_info=&#8221;{}&#8221; follow_button=&#8221;off&#8221; url_new_window=&#8221;on&#8221;]facebook[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=&#8221;twitter&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#000000&#8243; global_colors_info=&#8221;{}&#8221; follow_button=&#8221;off&#8221; url_new_window=&#8221;on&#8221;]X[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=&#8221;instagram&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#ea2c59&#8243; global_colors_info=&#8221;{}&#8221; follow_button=&#8221;off&#8221; url_new_window=&#8221;on&#8221;]instagram[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=&#8221;linkedin&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#007bb6&#8243; global_colors_info=&#8221;{}&#8221; follow_button=&#8221;off&#8221; url_new_window=&#8221;on&#8221;]linkedin[\/et_pb_social_media_follow_network][\/et_pb_social_media_follow][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<ul>\n<li>\u5728\u6211\u5011\u7684\u4efb\u4f55\u5a92\u9ad4\u9801\u9762\u4e0a\u95dc\u6ce8\u6211\u5011\u4e26\u52a0\u5165\u5c0d\u8a71\uff01<\/li>\n<li>\u4f7f\u7528 #endECD #ECDAwareness \u4e3b\u984c\u6a19\u7c64\u5728\u60a8\u7684\u793e\u4ea4\u5a92\u9ad4\u7db2\u7ad9\u4e0a\u5206\u4eab\u8cc7\u8a0a\u3002<\/li>\n<\/ul>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; custom_padding=&#8221;||3px|||&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h4>\u8209\u8fa6\u6d3b\u52d5<\/h4>\n<p>ECD \u5ba3\u50b3\u5468\u3001 <a href=\"https:\/\/www.rarediseaseday.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">\u7f55\u898b\u75c5\u65e5<\/a>\u548c <a href=\"https:\/\/www.worldcancerday.org\/?gclid=EAIaIQobChMIjLWI7J2B8gIVVP3jBx3zpwwfEAAYASAAEgJDB_D_BwE\" target=\"_blank\" rel=\"noopener noreferrer\">\u4e16\u754c\u764c\u75c7\u65e5<\/a> \u90fd\u662f\u8b93\u60a8\u7684\u670b\u53cb\u548c\u5bb6\u4eba\u805a\u5728\u4e00\u8d77\u8a0e\u8ad6 ECD \u91cd\u8981\u6027\u7684\u597d\u85c9\u53e3\u3002\u53ef\u4ee5\u7d44\u7e54\u591a\u7a2e\u65b9\u5f0f\u548c\u985e\u578b\u7684\u6d3b\u52d5\u4f86\u63d0\u9ad8\u8a8d\u8b58\u4e26\u53ef\u80fd\u70ba ECD \u7814\u7a76\u7c4c\u96c6\u8cc7\u91d1\u3002\u5982\u679c\u60a8\u8a08\u5283\u8209\u8fa6\u6d3b\u52d5\uff0c\u8acb\u806f\u7e6b\u6211\u5011\u5c0b\u6c42\u8aac\u660e\u6216\u63d0\u51fa\u554f\u984c\u3002\u8acb\u5c07\u6350\u6b3e\u5bc4\u81f3 ECD Global Alliance\uff0c P.O. 775\uff0c DeRidder\uff0c LA 70634 USA\u6216\u8a2a\u554f <a href=\"https:\/\/secure.qgiv.com\/for\/erdheim-chesterdiseaseglobalalliance\" target=\"_blank\" rel=\"noopener\">\u6b64\u8655<\/a>\u3002   <\/p>\n<p>\u544a\u8a34\u6211\u5011\u60a8\u5c0d ECD Awareness \u7684\u8a08\u5283\uff01\u9080\u8acb\u5176\u4ed6\u4eba\u5e6b\u52a9\u50b3\u64ad\u4fe1\u606f\u4e26\u6fc0\u52f5\u5176\u4ed6\u4eba\u8d70\u9032\u4ed6\u5011\u7684\u793e\u5340\u3002\u4ee5\u4e0b\u662f\u4e00\u4e9b\u6d3b\u52d5\u5275\u610f\uff1a  <\/p>\n<ul>\n<li>\u7d44\u7e54\u4e00\u6b21\u5167\u5bb9\u8c50\u5bcc\u7684\u8b1b\u5ea7<\/li>\n<li>\u8207\u5730\u65b9\u6216\u570b\u5bb6\u7576\u5c40\u6703\u9762\uff0c\u8a0e\u8ad6\u653f\u5e9c\u652f\u63f4\u7684\u91ab\u5b78\u9662\u7684\u6559\u80b2<\/li>\n<li>\u5728\u7576\u5730\u5b78\u6821\u6216\u91ab\u9662\u7d44\u7e54\u4e00\u6b21\u610f\u8b58\u5c55\u793a<\/li>\n<li>\u5c07 ECD \u610f\u8b58\u5e36\u5230\u7576\u5730\u5b78\u6821<\/li>\n<li>\u8209\u8fa6\u7121\u8072\u62cd\u8ce3\u3001\u70d8\u7119\u7fa9\u8ce3\u3001\u5802\u98df\u6350\u8d08\u6216\u9ad4\u80b2\u6d3b\u52d5<\/li>\n<li>\u53c3\u52a0\u60a8\u9644\u8fd1\u7684\u6d3b\u52d5<\/li>\n<li>\u5176\u4ed6 <a href=\"https:\/\/www.erdheim-chester.org\/zh-hant\/%e8%88%89%e8%be%a6%e7%b1%8c%e6%ac%be%e6%b4%bb%e5%8b%95\/\">\u7c4c\u6b3e\u60f3\u6cd5<\/a> \u548c\u8cc7\u6e90<\/li>\n<\/ul>\n<h4>\u6559\u80b2<\/h4>\n<p>\u60a8\u7684\u4e3b\u6cbb\u81e8\u5e8a\u91ab\u5e2b\u53ef\u80fd\u4e86\u89e3 Erdheim-Chester \u75be\u75c5\uff0c\u4f46\u91ab\u9662\u5176\u4ed6\u5de5\u4f5c\u4eba\u54e1\u5462\uff1f\u8acb\u8a62\u554f\u662f\u5426\u53ef\u4ee5\u5728\u5c08\u696d\u6e9d\u901a\u5340\u57df\u653e\u7f6e\u91ab\u5e2b\u7528\u5ba3\u50b3\u624b\u518a\u3002 <\/p>\n<p>[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/zh-hant\/%e7%b4%a2%e5%8f%96%e5%ae%a3%e5%82%b3%e5%86%8a\/&#8221; button_text=&#8221;\u7d22\u53d6\u5ba3\u50b3\u518a&#8221; _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][et_pb_text _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h4>\u5fd7\u9858\u8005<\/h4>\n<p>\u901a\u904e\u81ea\u9858\u53c3\u8207\u6211\u5011\u6b63\u5728\u9032\u884c\u7684\u4efb\u4f55\u4e00\u500b\u5ba3\u50b3\u9805\u76ee\u4f86\u8aac\u660e ECDGA \u63d0\u9ad8\u610f\u8b58\uff0c\u4f8b\u5982\u806f\u7e6b\u91ab\u751f\u4ee5\u5354\u8abf\u6709\u95dc ECD\u7684\u91ab\u5b78\u6f14\u793a\u3001\u7de8\u8f2f ECD \u8996\u983b\u7684\u5b57\u5e55\u6216\u66f4\u65b0\u5168\u7403 ECD Facebook \u9801\u9762\u3002\u806f\u7e6b\u6211\u5011\u4e86\u89e3 <a href=\"https:\/\/www.erdheim-chester.org\/zh-hant\/%e5%bf%97%e9%a1%98%e8%80%85%e8%a1%a8%e6%a0%bc\/\">\u5fd7\u9858\u8005<\/a> \u6a5f\u6703\u3002 <\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#F2F2F2&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>\u610f\u8b58\u8cc7\u6e90<\/h2>\n<h4>\u4ee5\u4e0b\u662f\u4e00\u4e9b\u53ef\u7528\u65bc\u63d0\u9ad8\u610f\u8b58\u7684\u512a\u79c0\u8cc7\u6e90\u3002<\/h4>\n<p>\u9019\u88e1\u6709\u4e00\u4e9b\u5f88\u597d\u7684\u8cc7\u6e90\uff0c\u53ef\u4ee5\u5411\u60a8\u7684\u793e\u5340\u3001\u670b\u53cb\u3001\u5bb6\u4eba\u3001\u7576\u5730\u91ab\u7642\u8fa6\u516c\u5ba4\u548c\u91ab\u9662\u5ba3\u50b3\u3002\u611f\u8b1d\u60a8\u7684\u8aac\u660e\uff01 <\/p>\n\n<table id=\"tablepress-30\" class=\"tablepress tablepress-id-30\">\n<thead>\n<tr class=\"row-1\">\n\t<th class=\"column-1\">Resource<\/th><th class=\"column-2\">Purpose\/Uses<\/th>\n<\/tr>\n<\/thead>\n<tbody class=\"row-striping row-hover\">\n<tr class=\"row-2\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/02\/2018-Printable-Fact-Cards.pdf\" target=\"_blank\">ECD Fact Cards<\/a><\/td><td class=\"column-2\">These cards give a short description of the disease and also list the website address. These are formatted to print in business card format.<\/td>\n<\/tr>\n<tr class=\"row-3\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2019\/10\/2019-General-Fact-Flyer-FINAL.pdf\" target=\"_blank\">General Fact Flyer<\/a><\/td><td class=\"column-2\">This informational flyer is easy to print and can be used to educate any population about ECD year-round.<\/td>\n<\/tr>\n<tr class=\"row-4\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/09\/2020-AW-flyer.pdf\" target=\"_blank\">2020 Awareness Week Flyer<\/a><\/td><td class=\"column-2\">Print this flyer to post on your community bulletin boards or email a copy to medical institutions, friends, and family.<\/td>\n<\/tr>\n<tr class=\"row-5\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/05\/ECD_Shirt-Pocket_Guide-2017.pdf\" target=\"_blank\">Informational Guide 4.5\u201dx 9.5\u201d<\/a><\/td><td class=\"column-2\">This double-sided document is a great fact list to add to your awareness campaign.  This size document fits easily into a man\u2019s shirt pocket, making it easier to hold onto.<br \/>\n<br \/>\n(Fits in men\u2019s shirt pocket.)<\/td>\n<\/tr>\n<tr class=\"row-6\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/09\/2017-ECD-Awareness-Week-LA-Proclamation.pdf\" target=\"_blank\">Proclamation Template<\/a><br \/>\n<a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/05\/Proclamation-and-Cover-Letter_2017_Template.pdf\" target=\"_blank\">Cover Letter<\/a><\/td><td class=\"column-2\">Use these templates to submit a request to your local city or state legislator to request the proclamation of  ECD Awareness Week.<\/td>\n<\/tr>\n<tr class=\"row-7\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/08\/2020-ECD-Medical-Brochure.pdf\" target=\"_blank\">ECD Medical Brochure<\/a><\/td><td class=\"column-2\">Raise physician awareness with this brochure.  Bring this pamphlet with you to all medical appointments, ECD-related or otherwise.<\/td>\n<\/tr>\n<tr class=\"row-8\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2020\/07\/2020-PATIENT-Brochure.pdf\" target=\"_blank\">General Brochure<\/a><\/td><td class=\"column-2\">Share information about this disease and the organization with your friends, family, and community.<\/td>\n<\/tr>\n<tr class=\"row-9\">\n\t<td class=\"column-1\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Letter-to-Doctor_Template_FINAL.docx\" target=\"_blank\">Letter to Your Doctor Template<\/a><\/td><td class=\"column-2\">Did your journey start out with a doctor that was unable to diagnose your ECD?  Write them a letter to give an update and offer education about your disease.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_color=&#8221;#35A4BB&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; text_text_color=&#8221;#FFFFFF&#8221; header_2_text_color=&#8221;#FFFFFF&#8221; text_orientation=&#8221;center&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>\u201c\u6210\u70ba\u4f60\u60f3\u5728\u4e16\u754c\u4e0a\u770b\u5230\u7684\u6539\u8b8a&#8230;&#8230;\u201d<\/h2>\n<p>-\u8056\u96c4\u7518\u5730<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[et_pb_dmb_breadcrumbs _builde [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-51159","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/pages\/51159","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/comments?post=51159"}],"version-history":[{"count":9,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/pages\/51159\/revisions"}],"predecessor-version":[{"id":130494,"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/pages\/51159\/revisions\/130494"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/zh-hant\/wp-json\/wp\/v2\/media?parent=51159"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}