{"id":102351,"date":"2018-05-16T19:44:54","date_gmt":"2018-05-17T00:44:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/%e7%ac%ac%e5%85%ad%e5%b1%86%e5%b9%b4%e5%ba%a6%e5%9c%8b%e9%9a%9b-ecd-%e6%82%a3%e8%80%85%e8%88%87%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83%ef%bc%8c%e4%bd%9b%e7%be%85%e9%87%8c%e9%81%94%e5%b7%9e%e5%a5%a7\/"},"modified":"2026-07-07T11:54:43","modified_gmt":"2026-07-07T16:54:43","slug":"%e7%ac%ac%e5%85%ad%e5%b1%86%e5%b9%b4%e5%ba%a6%e5%9c%8b%e9%9a%9b-ecd-%e6%82%a3%e8%80%85%e8%88%87%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83%ef%bc%8c%e4%bd%9b%e7%be%85%e9%87%8c%e9%81%94%e5%b7%9e%e5%a5%a7","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/zh-hant\/%e7%ac%ac%e5%85%ad%e5%b1%86%e5%b9%b4%e5%ba%a6%e5%9c%8b%e9%9a%9b-ecd-%e6%82%a3%e8%80%85%e8%88%87%e5%ae%b6%e5%ba%ad%e8%81%9a%e6%9c%83%ef%bc%8c%e4%bd%9b%e7%be%85%e9%87%8c%e9%81%94%e5%b7%9e%e5%a5%a7\/","title":{"rendered":"\u7b2c 6 \u5c46\u5e74\u5ea6 ECD \u60a3\u8005\u8207\u5bb6\u5c6c\u805a\u6703\uff0c\u4f5b\u7f85\u91cc\u9054\u5dde\u5967\u862d\u591a"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; 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width=&#8221;65%&#8221; width_tablet=&#8221;80%&#8221; width_phone=&#8221;80%&#8221; width_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;||0px||false|false&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text module_class=&#8221;event-table&#8221; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n\n<table id=\"tablepress-59\" class=\"tablepress tablepress-id-59\">\n<thead>\n<tr class=\"row-1\">\n\t<th class=\"column-1\">Presenter<\/th><th class=\"column-2\">Presentation Slides<\/th><th class=\"column-3\">Video<\/th>\n<\/tr>\n<\/thead>\n<tbody class=\"row-striping row-hover\">\n<tr class=\"row-2\">\n\t<td class=\"column-1\">Eric Jacobsen, MD, PhD<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Jacobsen_The-Drug-Development-Process.pdf\" target=\"_blank\">The Drug Trial Process<\/a><\/td><td class=\"column-3\"><a href=\"https:\/\/www.youtube.com\/watch?v=HJ3ahoEmGbw\" target=\"_blank\">The Drug Trial Process - Eric Jacobsen<\/a><\/td>\n<\/tr>\n<tr class=\"row-3\">\n\t<td class=\"column-1\">Ronald S. Go, MD<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Go_2018-ECD-Global-Allitance-Treatment-Options.pdf\" target=\"_blank\">Treatment Options for ECD<\/a><\/td><td class=\"column-3\"><a href=\"https:\/\/www.youtube.com\/watch?v=_sIOwTcDv2A\" target=\"_blank\">ECD Treatment Options - Ronald Go<\/a><\/td>\n<\/tr>\n<tr class=\"row-4\">\n\t<td class=\"column-1\">Cassie Nguyen, PharmD, BCOP<\/td><td class=\"column-2\">Drug Management<\/td><td class=\"column-3\"><a href=\"https:\/\/www.youtube.com\/watch?v=aKtwos-aYj0\" target=\"_blank\">Drug Management for ECD Patients - Cassie Nguyen<\/a><\/td>\n<\/tr>\n<tr class=\"row-5\">\n\t<td class=\"column-1\">Eli L. Diamond, MD<\/td><td class=\"column-2\">ECD and the Brain<\/td><td class=\"column-3\"><a href=\"https:\/\/www.youtube.com\/watch?v=rGJSPHObwCU\" target=\"_blank\">ECD Patient Registry - Eli Diamond<\/a><\/td>\n<\/tr>\n<tr class=\"row-6\">\n\t<td class=\"column-1\">Allison Mofsky, MA, CCC-SLP<\/td><td class=\"column-2\">Speech and Swallowing<\/td><td class=\"column-3\"><\/td>\n<\/tr>\n<tr class=\"row-7\">\n\t<td class=\"column-1\">Fady Hannah-Shmouni, MD, DABIM FRCPC<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Hannah-Shmouni-_-Endocrine.pdf\" target=\"_blank\">Endocrine Dysfunction in ECD<\/a><\/td><td class=\"column-3\"><a href=\"https:\/\/www.youtube.com\/watch?v=2W5u9XmJqBM\" target=\"_blank\">Endocrine Dysfunction - Fady Hannah-Shmouni<\/a><\/td>\n<\/tr>\n<tr class=\"row-8\">\n\t<td class=\"column-1\">Patty Bobryk, MHS, PT, MSCS, ATP<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/BOBRYK_ECD-and-Exercise.pdf\" target=\"_blank\">ECD and Exercise<\/a><\/td><td class=\"column-3\"><\/td>\n<\/tr>\n<tr class=\"row-9\">\n\t<td class=\"column-1\">Colleen Scordato, DPT, Cert. MDT<\/td><td class=\"column-2\">Physical Therapy<\/td><td class=\"column-3\"><a href=\"https:\/\/www.youtube.com\/watch?v=0rhNtEm8q04\" target=\"_blank\">Physical Therapy - Colleen Scordato<\/a><\/td>\n<\/tr>\n<tr class=\"row-10\">\n\t<td class=\"column-1\">Rebecca Donnenberg<\/td><td class=\"column-2\">Nutrition for ECD Patients<\/td><td class=\"column-3\"><a href=\"https:\/\/www.youtube.com\/watch?v=IuTOx3Ww59Y\" target=\"_blank\">Nutrition for ECD Patients - Rebecca Donnenberg<\/a><\/td>\n<\/tr>\n<tr class=\"row-11\">\n\t<td class=\"column-1\">Eli L. Diamond, MD<\/td><td class=\"column-2\">ECD Registry Update<\/td><td class=\"column-3\"><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; width=&#8221;65%&#8221; width_tablet=&#8221;80%&#8221; width_phone=&#8221;80%&#8221; width_last_edited=&#8221;on|phone&#8221; custom_padding=&#8221;||0px||false|false&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.5&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||15px||false|false&#8221; border_width_bottom=&#8221;2px&#8221; border_color_bottom=&#8221;#35A4BB&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>\u7167\u7247<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; 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Please see the event materials below for more on this successful event. Thank you to all participants!\r\n\r\n<strong>Presentation Slides<\/strong>\r\nComing soon!\r\n\r\n<strong>Reception Photos<\/strong>\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering Reception with medical professionals and ECD families on November 15, 2018 at the Orlando Health Regional Medical Center. Thank you to all participants for attending and engaging with the community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our <a href=\"https:\/\/www.facebook.com\/ErdheimChesterDisease\" target=\"_blank\" rel=\"noopener\">ECDGA Facebook page<\/a>.\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"35536,35548,35560,35572,35584,35596,35608,35620,35632,35644,35656,35668,35680,35692,35704,35716,35728,35740,35752,35764,35776,35788,35800,35812,35824,35836,35848,35860,35872,35884,35896,35908,35920,35932,35944,35956,35968\"]\r\n\r\n<strong>Patient Meeting Photos<\/strong>\r\n\r\nThe following photos were taken during the ECD Patient & Family Gathering meeting on November 16, 2018 the Orlando Health \u2013 Orlando Regional Medical Center. Thank you to all attendees for participating during the meeting and social times, allowing great support and connections within this community. You can find more photos on Facebook under the tag searches #ECDGA18 or directly in our <a href=\"https:\/\/www.facebook.com\/ErdheimChesterDisease\" target=\"_blank\" rel=\"noopener\">ECDGA Facebook page<\/a>. 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