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_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>\u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u093f<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]\u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u092a\u094d\u0930\u0938\u094d\u0924\u0941\u0924\u093f\u092f\u093e\u0901 \u0907\u0938 \u0909\u092e\u094d\u092e\u0940\u0926 \u092e\u0947\u0902 \u091c\u094b\u0921\u093c\u0940 \u0917\u0908 \u0939\u0948\u0902 \u0915\u093f \u0935\u0947 \u0909\u0928 \u0930\u094b\u0917\u093f\u092f\u094b\u0902, \u092a\u0930\u093f\u0935\u093e\u0930\u094b\u0902 \u0914\u0930 \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u0915\u094b\u0902 \u0915\u0940 \u092e\u0926\u0926 \u0915\u0930\u0947\u0902\u0917\u0940 \u091c\u094b <a href=\"https:\/\/www.erdheim-chester.org\/hi\/ecd-%e0%a4%95%e0%a5%87-%e0%a4%ac%e0%a4%be%e0%a4%b0%e0%a5%87-%e0%a4%ae%e0%a5%87%e0%a4%82\/\">ECD \u0915\u0947 \u092c\u093e\u0930\u0947 \u092e\u0947\u0902<\/a> \u0905\u0927\u093f\u0915 \u091c\u093e\u0928\u0928\u0947 \u092e\u0947\u0902 \u0930\u0941\u091a\u093f \u0930\u0916\u0924\u0947 \u0939\u0948\u0902\u0964 ECDGA \u091a\u093f\u0915\u093f\u0924\u094d\u0938\u093e \u0938\u092e\u0941\u0926\u093e\u092f \u0926\u094d\u0935\u093e\u0930\u093e ECD \u0930\u094b\u0917\u093f\u092f\u094b\u0902 \u0915\u0940 \u0926\u0947\u0916\u092d\u093e\u0932 \u092e\u0947\u0902 \u0938\u0941\u0927\u093e\u0930 \u0915\u0947 \u0932\u093f\u090f \u0915\u093f\u090f \u0917\u090f \u092a\u094d\u0930\u092f\u093e\u0938\u094b\u0902 \u0914\u0930 \u092f\u094b\u0917\u0926\u093e\u0928 \u0915\u0947 \u0932\u093f\u090f \u0906\u092d\u093e\u0930\u0940 \u0939\u0948\u0964[\/et_pb_text][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-33\" class=\"tablepress tablepress-id-33 tablepress-responsive tablepress-responsive-stack-headers tablepress-responsive-stack-phone\">\n<thead>\n<tr class=\"row-1\">\n\t<th class=\"column-1\">Presenter<\/th><th class=\"column-2\">Slides<\/th><th class=\"column-3\">Contact Information<\/th>\n<\/tr>\n<\/thead>\n<tbody class=\"row-striping row-hover\">\n<tr class=\"row-2\">\n\t<td class=\"column-1\">Craig Blinderman, MD, MA, FAAHPM<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Blinderman_Pain-Management.pdf\" target=\"_blank\">Pain management in Erdheim-Chester Disease<\/a><\/td><td class=\"column-3\">Columbia University Medical Center\/New York Presbyterian Hospital<br \/>\nE-mail: cdb21@columbia.edu | Telephone: 1.212.305.3071<\/td>\n<\/tr>\n<tr class=\"row-3\">\n\t<td class=\"column-1\">Eli L. Diamond, MD<\/td><td class=\"column-2\">ECD and the Brain Slides coming soon<\/td><td class=\"column-3\">Memorial Sloan-Kettering Cancer Center<br \/>\nE-mail: diamone1@mskcc.org | Telephone: 1.212.639.5122<\/td>\n<\/tr>\n<tr class=\"row-4\">\n\t<td class=\"column-1\">Mary Elizabeth Davis, RN, MSN, AOCNS  and Allison Hyde, RN, BSN<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Mary-Davis-Allison-Hyde-Demystifying-the-Clinical-Trial.pdf\" target=\"_blank\">Demystifying the Clinical Trial<\/a><br \/>\nSee also printable <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/01-2018-Studies-Trials-Guide-for-Web.pdf\" target=\"_blank\">ECD Studies &amp; Trials Guide<\/a><\/td><td class=\"column-3\">Memorial Sloan Kettering Cancer Center Davis<br \/>\nE-mail: davism@mskcc.org | Telephone: 1. 646.942.0189Hyde<br \/>\nTelephone: 1.916.505.1517<\/td>\n<\/tr>\n<tr class=\"row-5\">\n\t<td class=\"column-1\">Ronald Go, MD<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Ronald-Go_Treatment-Options-2017-ECD-PFG-V2.pdf\" target=\"_blank\">ECD Treatment Options<\/a><\/td><td class=\"column-3\">Mayo Clinic<br \/>\nE-mail: go.ronald@mayo.edu | Telephone: 1.507.284.5362<\/td>\n<\/tr>\n<tr class=\"row-6\">\n\t<td class=\"column-1\">Mark Heaney, MD<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Heaney-An-Overview-of-ECD.pdf\" target=\"_blank\">An Overview of ECD<\/a><\/td><td class=\"column-3\">Columbia University Medical Center<br \/>\nE-mail: Mlh2192@cumc.columbia.edu | Telephone: 1.646.317.5077<\/td>\n<\/tr>\n<tr class=\"row-7\">\n\t<td class=\"column-1\">Filip Janku, MD, PhD<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Janku_ECD_PFG-2017.pdf\" target=\"_blank\">ECD and Clinical Trials<\/a><br \/>\nSee also printable <a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/01-2018-Studies-Trials-Guide-for-Web.pdf\" target=\"_blank\">ECD Studies &amp; Trials Guide<\/a><\/td><td class=\"column-3\">The University of Texas MD Anderson Cancer Center<br \/>\nE-mail: fjanku@mdanderson.org | Telephone: 1.713.563.0803<\/td>\n<\/tr>\n<tr class=\"row-8\">\n\t<td class=\"column-1\">Meenal Kheterpal, MD<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Kheterpal_ECD_MK_FINAL.pdf\" target=\"_blank\">Skin Care Pearls ECD Management<\/a><\/td><td class=\"column-3\">Memorial Sloan Kettering Cancer Center<br \/>\nTelephone: 1.914.367.7295<\/td>\n<\/tr>\n<tr class=\"row-9\">\n\t<td class=\"column-1\">Andy J. Roth, MD<\/td><td class=\"column-2\"><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/03\/Roth_for-publication-only-Andy-Roth-ECD-HO-Psychological-Effects-on-the-Chronically-Ill-and-Their-Families.pdf\" target=\"_blank\">Psychological Effects on the Chronically Ill and Their Families<\/a><\/td><td class=\"column-3\">Memorial Sloan Kettering Cancer Center<br \/>\nTelephone: 1.646.888.0024<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<!-- #tablepress-33 from cache -->\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>\u092b\u094b\u091f\u094b<\/h2>\n<p>[\/et_pb_text][et_pb_text _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;20px||20px||false|false&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h3>\u0938\u094d\u0935\u093e\u0917\u0924 \u0938\u092e\u093e\u0930\u094b\u0939 \u0915\u0940 \u0924\u0938\u094d\u0935\u0940\u0930\u0947\u0902<\/h3>\n<p>\u0928\u093f\u092e\u094d\u0928\u0932\u093f\u0916\u093f\u0924 \u0924\u0938\u094d\u0935\u0940\u0930\u0947\u0902 26 \u0905\u0915\u094d\u091f\u0942\u092c\u0930, 2017 \u0915\u094b \u0928\u094d\u092f\u0942\u092f\u0949\u0930\u094d\u0915, \u090f\u0928\u0935\u093e\u0908 \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 \u092e\u093f\u0932\u0928 \u0938\u092e\u093e\u0930\u094b\u0939 \u0915\u0947 \u0926\u094c\u0930\u093e\u0928 \u0932\u0940 \u0917\u0908 \u0925\u0940\u0902\u0964 \u0938\u092e\u0941\u0926\u093e\u092f \u0915\u0947 \u0938\u093e\u0925 \u092d\u093e\u0917 \u0932\u0947\u0928\u0947 \u0914\u0930 \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 \u0915\u0943\u092a\u092f\u093e 15 \u0928\u0935\u0902\u092c\u0930, 2018 \u0915\u094b \u0911\u0930\u0932\u0948\u0902\u0921\u094b \u092e\u0947\u0902 \u092b\u093f\u0930 \u0938\u0947 <a href=\"https:\/\/www.erdheim-chester.org\/hi\/%e0%a4%b9%e0%a4%ae%e0%a4%b8%e0%a5%87-%e0%a4%9c%e0%a5%81%e0%a4%a1%e0%a4%bc%e0%a5%87%e0%a4%82\/\">\u0939\u092e\u093e\u0930\u0947 \u0938\u093e\u0925 \u091c\u0941\u0921\u093c\u0947\u0902<\/a>![\/et_pb_text][et_pb_gallery gallery_ids=&#8221;37661,37673,37685,37697,37709,37721,37733,37745,37757,37769,37781,37793,37805,37817,37829,37841,37853,37865,37877,37889,37901,37913,37925,37937,37949,37961,37973,37985,37997,38009,38021,38033,38045,38057,38069,38081,38093,38105,38117,38129,38141,38153,38165,38177,38189,38201,38213,38225,38237,38249,38261,38273,38285,38297,38309,38321,38333,38345,38357,38369,38381,38393,38405,38417,38429,38441,38453,38465,38477,38489,38501,38513,38525,38537,38549,38561,38573,38585,38597,38609,38621,38633,38645,38657,38669,38681,38693,38705,38717,38729,38741,38753,38765,38777,38789,38801,38813&#8243; 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posts_number=&#8221;100&#8243; orientation=&#8221;portrait&#8221; show_title_and_caption=&#8221;off&#8221; module_class=&#8221;event-gallery&#8221; _builder_version=&#8221;4.27.6&#8243; _module_preset=&#8221;default&#8221; db_images_per_row=&#8221;5&#8243; db_image_max_width=&#8221;95%&#8221; db_image_max_height=&#8221;88px&#8221; db_image_row_spacing=&#8221;1%&#8221; dbdb_version=&#8221;5.1.1&#8243; db_image_object_fit=&#8221;cover&#8221; border_radii_image=&#8221;on|8px|8px|8px|8px&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_gallery][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u0928\u094d\u092f\u0942\u092f\u0949\u0930\u094d\u0915 \u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u0938\u092d\u093e \u0938\u092e\u0942\u0939 \u091a\u093f\u0924\u094d\u0930 2017 \u0930\u094b\u0917\u0940 \u0914\u0930 \u092a\u0930\u093f\u0935\u093e\u0930 \u092e\u093f\u0932\u0928 \u0915\u093e \u0938\u093e\u0930\u093e\u0902\u0936\u0907\u0938 \u0935\u0930\u094d\u0937 \u0915\u0947 ECD \u0930\u094b\u0917\u0940 \u0938\u092e\u094d\u092e\u0947\u0932\u0928 \u0915\u094b \u090f\u0915 \u092c\u0921\u093c\u0940 \u0938\u092b\u0932\u0924\u093e \u092c\u0928\u093e\u0928\u0947 \u0915\u0947 \u0932\u093f\u090f 150 \u092a\u094d\u0930\u0924\u093f\u092d\u093e\u0917\u093f\u092f\u094b\u0902 \u0915\u094b \u0927\u0928\u094d\u092f\u0935\u093e\u0926! [&hellip;]<\/p>\n","protected":false},"author":20,"featured_media":135150,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"<strong><a href=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/01\/2017-Patient-Caregiver-Attendees-Small-e1516487954105.jpg\"><img class=\"alignleft size-medium wp-image-39526\" src=\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/01\/2017-Patient-Caregiver-Attendees-Small-e1516487954105-300x200.jpg\" alt=\"\" width=\"300\" height=\"200\" \/><\/a>Location:<\/strong> New York, NY\r\n\r\nThank you to the 150 participants for making this year\u2019s ECD Patient Gathering a huge success! Patients, family members, nurses, research teams and numerous physicians attended the 2017 Patient & Family Gathering held in New York. Attendees were brought up-to-date on the latest research, treatments, and care management techniques, including the psychological affects of living with ECD. Please see the event materials below for more information.\r\n\r\n<strong>Presentation Slides<\/strong>\r\n\r\nThe following presentations have been added in hopes that they will help patients, families, and physicians interested in learning more about ECD. The ECDGA is grateful for the efforts and contributions made by the medical community to improve care for ECD patients.\r\n\r\n[table id=33 \/]\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 October 26, 2017 in New York, NY. Thank you to all participants for attending and engaging with the community. Please join us again on November 15, 2018 in Orlando!\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"37654,37666,37678,37690,37702,37714,37726,37738,37750,37762,37774,37786,37798,37810,37822,37834,37846,37858,37870,37882,37894,37906,37918,37930,37942,37954,37966,37978,37990,38002,38014,38026,38038,38050,38062,38074,38086,38098,38110,38122,38134,38146,38158,38170,38182,38194,38206,38218,38230,38242,38254,38266,38278,38290,38302,38314,38326,38338,38350,38362,38374,38386,38398,38410,38422,38434,38446,38458,38470,38482,38494,38506,38518,38530,38542,38554,38566,38578,38590,38602,38614,38626,38638,38650,38662,38674,38686,38698,38710,38722,38734,38746,38758,38770,38782,38794,38806\"]\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 October 27, 2017 in New York, NY. Thank you to all attendees for participating during the meeting and social times, allowing for great support and connections within this community. 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