{"id":102349,"date":"2018-05-16T19:44:54","date_gmt":"2018-05-17T00:44:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/6%e0%a4%b5%e0%a4%be%e0%a4%82-%e0%a4%b5%e0%a4%be%e0%a4%b0%e0%a5%8d%e0%a4%b7%e0%a4%bf%e0%a4%95-%e0%a4%85%e0%a4%82%e0%a4%a4%e0%a4%b0%e0%a5%8d%e0%a4%b0%e0%a4%be%e0%a4%b7%e0%a5%8d%e0%a4%9f%e0%a5%8d\/"},"modified":"2026-07-07T11:54:50","modified_gmt":"2026-07-07T16:54:50","slug":"6%e0%a4%b5%e0%a4%be%e0%a4%82-%e0%a4%b5%e0%a4%be%e0%a4%b0%e0%a5%8d%e0%a4%b7%e0%a4%bf%e0%a4%95-%e0%a4%85%e0%a4%82%e0%a4%a4%e0%a4%b0%e0%a5%8d%e0%a4%b0%e0%a4%be%e0%a4%b7%e0%a5%8d%e0%a4%9f%e0%a5%8d","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/hi\/6%e0%a4%b5%e0%a4%be%e0%a4%82-%e0%a4%b5%e0%a4%be%e0%a4%b0%e0%a5%8d%e0%a4%b7%e0%a4%bf%e0%a4%95-%e0%a4%85%e0%a4%82%e0%a4%a4%e0%a4%b0%e0%a5%8d%e0%a4%b0%e0%a4%be%e0%a4%b7%e0%a5%8d%e0%a4%9f%e0%a5%8d\/","title":{"rendered":"\u091b\u0920\u0940 \u0935\u093e\u0930\u094d\u0937\u093f\u0915 ECD \u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u0938\u092d\u093e \u0911\u0930\u0932\u0948\u0902\u0921\u094b, FL"},"content":{"rendered":"

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\u0911\u0930\u0932\u0948\u0902\u0921\u094b \u0907\u0902\u091f\u0930\u0928\u0947\u0936\u0928\u0932 ECD \u092a\u0947\u0936\u0947\u0902\u091f \u090f\u0902\u0921 \u092b\u0948\u092e\u093f\u0932\u0940 \u0917\u0948\u0926\u0930\u093f\u0902\u0917 \u0917\u094d\u0930\u0941\u092a \u092a\u093f\u0915\u094d\u091a\u0930 2018<\/p>\n<\/div>\n<\/div>\n

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\u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u092e\u093f\u0932\u0928 \u0915\u093e \u0938\u093e\u0930\u093e\u0902\u0936<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]2018 \u0930\u094b\u0917\u0940 \u090f\u0935\u0902 \u092a\u0930\u093f\u0935\u093e\u0930 \u0938\u092e\u094d\u092e\u0947\u0932\u0928 (PFG) \u092e\u0947\u0902 4 \u0926\u0947\u0936\u094b\u0902 \u0938\u0947 75 \u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u0915\u0947 \u0938\u0926\u0938\u094d\u092f \u090f\u0915 \u0938\u093e\u0925 \u0906\u090f\u0964 \u0930\u094b\u0917\u0940\/\u092a\u0930\u093f\u0935\u093e\u0930 \u0938\u092e\u0941\u0926\u093e\u092f \u0915\u0947 \u0938\u093e\u0925 44 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u0915 \u0914\u0930 \u0935\u0948\u091c\u094d\u091e\u093e\u0928\u093f\u0915 \u0936\u093e\u092e\u093f\u0932 \u0939\u0941\u090f \u091c\u094b \u0930\u094b\u0917\u093f\u092f\u094b\u0902 \u0915\u0940 \u0926\u0947\u0916\u092d\u093e\u0932 \u0915\u0930\u0928\u0947 \u0914\u0930 Erdheim-Chester Disease \u0915\u0947 \u092c\u093e\u0930\u0947 \u092e\u0947\u0902 \u0905\u0927\u093f\u0915 \u091c\u093e\u0928\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0938\u092e\u0930\u094d\u092a\u093f\u0924 \u0939\u0948\u0902\u0964 \u091a\u094c\u0926\u0939 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u0915\u094b\u0902\/\u0935\u0948\u091c\u094d\u091e\u093e\u0928\u093f\u0915\u094b\u0902 \u0928\u0947 ECD \u0914\u0930 ECD \u0938\u0939\u093e\u092f\u0924\u093e \u0906\u0935\u0936\u094d\u092f\u0915\u0924\u093e\u0913\u0902 \u092a\u0930 \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u093f\u092f\u093e\u0901 \u0926\u0940\u0902\u0964 \u0938\u092d\u0940 \u0909\u092a\u0938\u094d\u0925\u093f\u0924 \u0932\u094b\u0917\u094b\u0902 \u0915\u0947 \u0938\u093e\u0925 \u090f\u0915 \u0938\u092e\u093e\u0930\u094b\u0939 \u0930\u093e\u0924\u094d\u0930\u093f\u092d\u094b\u091c \u0915\u093e \u0906\u0928\u0902\u0926 \u0932\u093f\u092f\u093e \u0917\u092f\u093e, \u091c\u093f\u0938\u0938\u0947 \u0938\u093e\u092e\u0941\u0926\u093e\u092f\u093f\u0915 \u0928\u0947\u0924\u093e\u0913\u0902 \u0915\u0947 \u0938\u093e\u0925 \u092e\u0947\u0932\u091c\u094b\u0932 \u0914\u0930 \u092e\u093e\u0928\u094d\u092f\u0924\u093e \u0915\u093e \u0938\u092e\u092f \u092e\u093f\u0932\u093e \u091c\u094b ECD \u0938\u092e\u0941\u0926\u093e\u092f \u0915\u0940 \u0938\u0939\u093e\u092f\u0924\u093e \u0915\u0947 \u0932\u093f\u090f \u0905\u092a\u0928\u093e \u0938\u092e\u092f \u0914\u0930 \u0938\u0902\u0938\u093e\u0927\u0928 \u0938\u092e\u0930\u094d\u092a\u093f\u0924 \u0915\u0930\u0924\u0947 \u0939\u0948\u0902\u0964 \u0915\u0943\u092a\u092f\u093e PFG \u0917\u0924\u093f\u0935\u093f\u0927\u093f\u092f\u094b\u0902 \u0914\u0930 \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u093f\u092f\u094b\u0902 \u0915\u0947 \u0938\u093e\u0925-\u0938\u093e\u0925 \u0938\u092e\u094d\u092e\u0947\u0932\u0928 \u0915\u0940 \u0924\u0938\u094d\u0935\u0940\u0930\u094b\u0902 \u0915\u0947 \u092c\u093e\u0930\u0947 \u092e\u0947\u0902 \u0905\u0927\u093f\u0915 \u091c\u093e\u0928\u0915\u093e\u0930\u0940 \u0915\u0947 \u0932\u093f\u090f \u0928\u0940\u091a\u0947 \u0926\u0940 \u0917\u0908 \u091c\u093e\u0928\u0915\u093e\u0930\u0940 \u0926\u0947\u0916\u0947\u0902\u0964[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”10px||20px||false|false” locked=”off” global_colors_info=”{}” width__hover_enabled=”off|desktop”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}”]<\/p>\n

\u092e\u093f\u0932\u0928 \u0938\u092e\u093e\u0930\u094b\u0939 \u0915\u0940 \u0915\u093e\u0930\u094d\u092f\u0938\u0942\u091a\u0940 \u0915\u0947 \u0938\u093e\u0925 \u0915\u093e\u0930\u094d\u092f\u0915\u094d\u0930\u092e<\/h2>\n

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\u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u093f<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”||0px||false|false” locked=”off” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text module_class=”event-table” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n\n\n\n\n\t\n\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t
Presenter<\/th>Presentation Slides<\/th>Video<\/th>\n<\/tr>\n<\/thead>\n
Eric Jacobsen, MD, PhD<\/td>The Drug Trial Process<\/a><\/td>The Drug Trial Process - Eric Jacobsen<\/a><\/td>\n<\/tr>\n
Ronald S. Go, MD<\/td>Treatment Options for ECD<\/a><\/td>ECD Treatment Options - Ronald Go<\/a><\/td>\n<\/tr>\n
Cassie Nguyen, PharmD, BCOP<\/td>Drug Management<\/td>Drug Management for ECD Patients - Cassie Nguyen<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD and the Brain<\/td>ECD Patient Registry - Eli Diamond<\/a><\/td>\n<\/tr>\n
Allison Mofsky, MA, CCC-SLP<\/td>Speech and Swallowing<\/td><\/td>\n<\/tr>\n
Fady Hannah-Shmouni, MD, DABIM FRCPC<\/td>Endocrine Dysfunction in ECD<\/a><\/td>Endocrine Dysfunction - Fady Hannah-Shmouni<\/a><\/td>\n<\/tr>\n
Patty Bobryk, MHS, PT, MSCS, ATP<\/td>ECD and Exercise<\/a><\/td><\/td>\n<\/tr>\n
Colleen Scordato, DPT, Cert. MDT<\/td>Physical Therapy<\/td>Physical Therapy - Colleen Scordato<\/a><\/td>\n<\/tr>\n
Rebecca Donnenberg<\/td>Nutrition for ECD Patients<\/td>Nutrition for ECD Patients - Rebecca Donnenberg<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD Registry Update<\/td><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n

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\u092b\u094b\u091f\u094b<\/h2>\n

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\u0938\u094d\u0935\u093e\u0917\u0924 \u0938\u092e\u093e\u0930\u094b\u0939 \u0915\u0940 \u0924\u0938\u094d\u0935\u0940\u0930\u0947\u0902<\/h3>\n

\u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0924\u0938\u094d\u0935\u0940\u0930\u0947\u0902 15 \u0928\u0935\u0902\u092c\u0930, 2018 \u0915\u094b \u0911\u0930\u0932\u0948\u0902\u0921\u094b \u0939\u0947\u0932\u094d\u0925 \u0930\u0940\u091c\u0928\u0932 \u092e\u0947\u0921\u093f\u0915\u0932 \u0938\u0947\u0902\u091f\u0930 \u092e\u0947\u0902 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u092a\u0947\u0936\u0947\u0935\u0930\u094b\u0902 \u0914\u0930 ECD \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0915\u0947 \u0938\u093e\u0925 ECD \u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u0938\u092d\u093e \u0930\u093f\u0938\u0947\u092a\u094d\u0936\u0928 \u0915\u0947 \u0926\u094c\u0930\u093e\u0928 \u0932\u0940 \u0917\u0908 \u0925\u0940\u0902\u0964 \u0909\u092a\u0938\u094d\u0925\u093f\u0924 \u0939\u094b\u0928\u0947 \u0914\u0930 \u0938\u092e\u0941\u0926\u093e\u092f \u0915\u0947 \u0938\u093e\u0925 \u091c\u0941\u0921\u093c\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0938\u092d\u0940 \u092a\u094d\u0930\u0924\u093f\u092d\u093e\u0917\u093f\u092f\u094b\u0902 \u0915\u094b \u0927\u0928\u094d\u092f\u0935\u093e\u0926\u0964 \u0906\u092a \u091f\u0948\u0917 \u0938\u0930\u094d\u091a #ECDGA18 \u0915\u0947 \u0924\u0939\u0924 \u092b\u0947\u0938\u092c\u0941\u0915 \u092a\u0930 \u092f\u093e \u0938\u0940\u0927\u0947 \u0939\u092e\u093e\u0930\u0947 ECDGA \u092b\u0947\u0938\u092c\u0941\u0915 \u092a\u0947\u091c<\/a> \u092a\u0930 \u0905\u0927\u093f\u0915 \u0924\u0938\u094d\u0935\u0940\u0930\u0947\u0902 \u092a\u093e \u0938\u0915\u0924\u0947 \u0939\u0948\u0902\u0964 <\/p>\n

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\u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0924\u0938\u094d\u0935\u0940\u0930\u0947\u0902 16 \u0928\u0935\u0902\u092c\u0930, 2018 \u0915\u094b \u0911\u0930\u0932\u0948\u0902\u0921\u094b \u0939\u0947\u0932\u094d\u0925 – \u0911\u0930\u0932\u0948\u0902\u0921\u094b \u0915\u094d\u0937\u0947\u0924\u094d\u0930\u0940\u092f \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u0915\u0947\u0902\u0926\u094d\u0930 \u092e\u0947\u0902 ECD \u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u0938\u092d\u093e \u092c\u0948\u0920\u0915 \u0915\u0947 \u0926\u094c\u0930\u093e\u0928 \u0932\u0940 \u0917\u0908 \u0925\u0940\u0902\u0964 \u092c\u0948\u0920\u0915 \u0914\u0930 \u0938\u093e\u092e\u093e\u091c\u093f\u0915 \u0938\u092e\u092f \u0915\u0947 \u0926\u094c\u0930\u093e\u0928 \u092d\u093e\u0917 \u0932\u0947\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f \u0938\u092d\u0940 \u0909\u092a\u0938\u094d\u0925\u093f\u0924 \u0932\u094b\u0917\u094b\u0902 \u0915\u094b \u0927\u0928\u094d\u092f\u0935\u093e\u0926, \u091c\u093f\u0938\u0938\u0947 \u0907\u0938 \u0938\u092e\u0941\u0926\u093e\u092f \u0915\u0947 \u092d\u0940\u0924\u0930 \u092c\u0939\u0941\u0924 \u0938\u092e\u0930\u094d\u0925\u0928 \u0914\u0930 \u0915\u0928\u0947\u0915\u094d\u0936\u0928 \u092e\u093f\u0932\u093e\u0964 \u0906\u092a \u091f\u0948\u0917 \u0938\u0930\u094d\u091a #ECDGA18 \u0915\u0947 \u0924\u0939\u0924 \u092b\u0947\u0938\u092c\u0941\u0915 \u092a\u0930 \u092f\u093e \u0938\u0940\u0927\u0947 \u0939\u092e\u093e\u0930\u0947 ECDGA \u092b\u0947\u0938\u092c\u0941\u0915 \u092a\u0947\u091c<\/a> \u092a\u0930 \u0905\u0927\u093f\u0915 \u0924\u0938\u094d\u0935\u0940\u0930\u0947\u0902 \u092a\u093e \u0938\u0915\u0924\u0947 \u0939\u0948\u0902\u0964 \u0915\u0943\u092a\u092f\u093e 12 \u091c\u0941\u0932\u093e\u0908, 2019 \u0915\u094b \u092e\u093f\u0932\u093e\u0928, \u0907\u091f\u0932\u0940 \u092e\u0947\u0902 \u092b\u093f\u0930 \u0938\u0947 \u0939\u092e\u093e\u0930\u0947 \u0938\u093e\u0925 \u091c\u0941\u0921\u093c\u0947\u0902! <\/p>\n

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Please see the event materials below for more on this successful event. Thank you to all participants!\r\n\r\nPresentation Slides<\/strong>\r\nComing soon!\r\n\r\nReception 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 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\nPatient 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 ECDGA Facebook page<\/a>. Please join us again on July 12, 2019 in Milan, Italy!\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"35980,35992,36004,36016,36028,36040,36064,36052,37516,37504,37492,37480,37468,37456,37444,37432,37408,37396,37384,37372,37360,37348,37336,37324,37312,37300,37288,37276,37264,37252,37240,37228,37216,37204,37192,37180,37168,37156,37144,37132,37120,37108,37096,37084,37072,37060,37048,37036,37024,37012,37000,36988,36976,36964,36952,36940,36928,36916,36904,36892,36880,36868,36856,36844,36832,36820,36808,36796,36784,36772,36760,36748,36736,36724,36712,36700,36688,36676,36664,36652,36640,36628,36616,36604,36592,36580,36568,36556,36544,36532,36520,36508,36496,36484,36472,36460,36448,36436,36424,36412,36400,36388,36376,36364,36352,36340,36328,36316,36304,36292,36280,36268,36256,36244,36232,36220,36208,36196,36184,36172,36160,36148,36136,36124,36112,36100,36088,36076,37528\"]","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4854],"tags":[],"class_list":["post-102349","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-4854"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/102349","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/comments?post=102349"}],"version-history":[{"count":43,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/102349\/revisions"}],"predecessor-version":[{"id":173603,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/posts\/102349\/revisions\/173603"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media\/173034"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/media?parent=102349"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/categories?post=102349"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/hi\/wp-json\/wp\/v2\/tags?post=102349"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}