{"id":102355,"date":"2019-01-11T19:47:40","date_gmt":"2019-01-12T01:47:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/%d7%9e%d7%a4%d7%92%d7%a9-%d7%91%d7%99%d7%a0%d7%9c%d7%90%d7%95%d7%9e%d7%99-7-%d7%9c%d7%97%d7%95%d7%9c%d7%99-ecd-%d7%95%d7%91%d7%a0%d7%99-%d7%9e%d7%a9%d7%a4%d7%97%d7%94-%d7%9e%d7%99%d7%9c%d7%90%d7%a0\/"},"modified":"2026-06-18T08:45:37","modified_gmt":"2026-06-18T13:45:37","slug":"%d7%9e%d7%a4%d7%92%d7%a9-%d7%91%d7%99%d7%a0%d7%9c%d7%90%d7%95%d7%9e%d7%99-7-%d7%9c%d7%97%d7%95%d7%9c%d7%99-ecd-%d7%95%d7%91%d7%a0%d7%99-%d7%9e%d7%a9%d7%a4%d7%97%d7%94-%d7%9e%d7%99%d7%9c%d7%90%d7%a0","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/he\/%d7%9e%d7%a4%d7%92%d7%a9-%d7%91%d7%99%d7%a0%d7%9c%d7%90%d7%95%d7%9e%d7%99-7-%d7%9c%d7%97%d7%95%d7%9c%d7%99-ecd-%d7%95%d7%91%d7%a0%d7%99-%d7%9e%d7%a9%d7%a4%d7%97%d7%94-%d7%9e%d7%99%d7%9c%d7%90%d7%a0\/","title":{"rendered":"\u05de\u05e4\u05d2\u05e9 \u05e9\u05e0\u05ea\u05d9 7 \u05dc\u05d7\u05d5\u05dc\u05d9 ECD \u05d5\u05d1\u05e0\u05d9 \u05de\u05e9\u05e4\u05d7\u05d4 \u05de\u05d9\u05dc\u05d0\u05e0\u05d5, \u05d0\u05d9\u05d8\u05dc\u05d9\u05d4"},"content":{"rendered":"

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\u05ea\u05de\u05d5\u05e0\u05ea \u05e7\u05d1\u05d5\u05e6\u05d4 \u05e9\u05dc \u05de\u05e4\u05d2\u05e9 \u05d7\u05d5\u05dc\u05d9 ECD \u05d5\u05d1\u05e0\u05d9 \u05de\u05e9\u05e4\u05d7\u05d4 \u05d4\u05d1\u05d9\u05e0\u05dc\u05d0\u05d5\u05de\u05d9 \u05d1\u05de\u05d9\u05dc\u05d0\u05e0\u05d5 2019<\/p>\n<\/div>\n<\/div>\n

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\u05ea\u05d5\u05db\u05e0\u05d9\u05d5\u05ea \u05e2\u05dd \u05e1\u05d3\u05e8 \u05d9\u05d5\u05dd \u05d4\u05de\u05e4\u05d2\u05e9<\/h2>\n

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[\/et_pb_text][et_pb_text _builder_version="4.27.6" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]\u05d4\u05de\u05e6\u05d2\u05d5\u05ea \u05d4\u05d1\u05d0\u05d5\u05ea \u05e0\u05d5\u05e1\u05e4\u05d5 \u05d1\u05ea\u05e7\u05d5\u05d5\u05d4 \u05e9\u05d4\u05df \u05d9\u05e1\u05d9\u05d9\u05e2\u05d5 \u05dc\u05de\u05d8\u05d5\u05e4\u05dc\u05d9\u05dd, \u05dc\u05de\u05e9\u05e4\u05d7\u05d5\u05ea \u05d5\u05dc\u05e8\u05d5\u05e4\u05d0\u05d9\u05dd \u05d4\u05de\u05e2\u05d5\u05e0\u05d9\u05d9\u05e0\u05d9\u05dd \u05dc\u05dc\u05de\u05d5\u05d3 \u05e2\u05d5\u05d3 \u05e2\u05dc ECD<\/a>. \u05d4-ECDGA \u05d0\u05e1\u05d9\u05e8 \u05ea\u05d5\u05d3\u05d4 \u05e2\u05dc \u05d4\u05de\u05d0\u05de\u05e6\u05d9\u05dd \u05d5\u05d4\u05ea\u05e8\u05d5\u05de\u05d5\u05ea \u05e9\u05dc \u05d4\u05e7\u05d4\u05d9\u05dc\u05d4 \u05d4\u05e8\u05e4\u05d5\u05d0\u05d9\u05ea \u05dc\u05e9\u05d9\u05e4\u05d5\u05e8 \u05d4\u05d8\u05d9\u05e4\u05d5\u05dc \u05d1\u05de\u05d8\u05d5\u05e4\u05dc\u05d9 ECD.[\/et_pb_text][et_pb_text module_class="event-table" _builder_version="4.27.6" _module_preset="default" global_colors_info="{}" theme_builder_area="post_content"]\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\n\t\n\t\n\t
Presenter<\/th>Presentation Slides<\/th>English Video<\/th>\n<\/tr>\n<\/thead>\n
Lorenzo Dagna, MD, PhD<\/td>Welcome & Overview of ECD<\/a><\/td>Welcome and Overview - Dearbhaile Dhubhlaoich & Lorenzo Dagna<\/a><\/td>\n<\/tr>\n
Lorenzo Dagna, MD, PhD<\/td>Drug Management<\/a><\/td>Overview of ECD and Drug Management - Lorenzo Dagna<\/a><\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>The Drug Trial Process<\/a><\/td>The Drug Trial Process - Filip Janku<\/a><\/td>\n<\/tr>\n
Julien Haroche , MD, PhD<\/td>Organ Involvement in ECD<\/td>Organ Involvement in ECD - Julien Haroche<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD and the Brain<\/a><\/td>ECD and the Brain <\/a>- Eli Diamond<\/td>\n<\/tr>\n
Ronald Go, MD (moderator)<\/td>Question & Answer with the Experts<\/td>Expert Question & Answer Panel<\/a><\/td>\n<\/tr>\n
Stephane Barete, MD, PhD<\/td>Skin Involvement<\/a><\/td>Skin Involvement with ECD - St\u00e9phane Barete<\/a><\/td>\n<\/tr>\n
Mark Heaney, MD, PhD<\/td>Mutations in ECD<\/a><\/td>Mutations in ECD - Mark Heaney<\/a><\/td>\n<\/tr>\n
Carine Courtillot, MD<\/td>Endocrinology & Hormones<\/a><\/td>Endocrine Manifestations - Carine Courtillot<\/a><\/td>\n<\/tr>\n
Augusto Vaglio, MD, PhD<\/td>Renal & Ureteral Involvement<\/a><\/td>Renal & Ureteral Involvement in ECD - Augusto Vaglio<\/a><\/td>\n<\/tr>\n
Roei Mazor<\/td>Daily Care<\/td>Daily Care - Roei Mazor<\/a><\/td>\n<\/tr>\n
Eli Diamond, MD<\/td>ECD Registry Update<\/a><\/td>ECD Patient Registry Update - Eli Diamond<\/a><\/td>\n<\/tr>\n
ECDGA<\/td>ECDGA Close<\/td>Close - The ECD Global Alliance Team<\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n
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\u05d7\u05d5\u05d5\u05d9\u05d5\u05ea \u05d4\u05de\u05e9\u05ea\u05ea\u05e4\u05d9\u05dd<\/h2>\n

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"\u05d4\u05d9\u05d4 \u05de\u05d3\u05d4\u05d9\u05dd \u05dc\u05e8\u05d0\u05d5\u05ea \u05d0\u05ea \u05d4\u05de\u05e1\u05d9\u05e8\u05d5\u05ea \u05d5\u05d4\u05de\u05d7\u05d5\u05d9\u05d1\u05d5\u05ea \u05e9\u05d4\u05e8\u05d5\u05e4\u05d0\u05d9\u05dd \u05d4\u05dc\u05dc\u05d5 \u05d4\u05e4\u05d2\u05d9\u05e0\u05d5 \u05d1\u05db\u05dc \u05d4\u05e0\u05d5\u05d2\u05e2 \u05dc\u05d0\u05d1\u05d7\u05d5\u05df, \u05d8\u05d9\u05e4\u05d5\u05dc \u05d5\u05de\u05d0\u05de\u05e6\u05d9 \u05de\u05d7\u05e7\u05e8 \u05d4\u05e7\u05e9\u05d5\u05e8\u05d9\u05dd \u05dc-ECD. \u05d0\u05e0\u05d9 \u05d0\u05e1\u05d9\u05e8\u05ea \u05ea\u05d5\u05d3\u05d4 \u05e2\u05dc \u05d4\u05d4\u05d6\u05d3\u05de\u05e0\u05d5\u05ea \u05d4\u05e0\u05d3\u05d9\u05e8\u05d4 \u05d4\u05d6\u05d5."<\/em><\/p>\n

\u2013 \u05dc\u05e8\u05ea'\u05d4 \u05e8. \u05ea\u05d5\u05de\u05e1, \u05de\u05d8\u05e4\u05dc\u05ea \u05d1\u05d7\u05d5\u05dc\u05d9 ECD<\/strong><\/p>\n

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"\u05d0\u05e0\u05d9 \u05e2\u05d5\u05d1\u05d3\u05ea \u05d1\u05ea\u05d7\u05d5\u05dd \u05d4\u05d1\u05e8\u05d9\u05d0\u05d5\u05ea \u05db\u05d1\u05e8 \u05dc\u05de\u05e2\u05dc\u05d4 \u05de-20 \u05e9\u05e0\u05d4 \u05d5\u05de\u05e2\u05d5\u05dc\u05dd \u05dc\u05d0 \u05e8\u05d0\u05d9\u05ea\u05d9 \u05d0\u05d5 \u05d7\u05d5\u05d5\u05d9\u05ea\u05d9 \u05e7\u05d1\u05d5\u05e6\u05d4 \u05db\u05d4 \u05d0\u05db\u05e4\u05ea\u05d9\u05ea \u05d5\u05de\u05e1\u05d5\u05e8\u05d4 \u05e9\u05dc \u05d0\u05e0\u05e9\u05d9 \u05de\u05e7\u05e6\u05d5\u05e2 \u05d1\u05ea\u05d7\u05d5\u05dd \u05d4\u05d1\u05e8\u05d9\u05d0\u05d5\u05ea \u05d5\u05de\u05ea\u05e0\u05d3\u05d1\u05d9\u05dd!"<\/em><\/p>\n

\u2013 \u05d7\u05d5\u05dc\u05d4 ECD \u05e9\u05d4\u05e9\u05ea\u05ea\u05e3<\/strong><\/p>\n

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\u05ea\u05e6\u05dc\u05d5\u05de\u05d9\u05dd<\/h2>\n

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\u05ea\u05de\u05d5\u05e0\u05d5\u05ea \u05de\u05d4\u05e7\u05d1\u05dc\u05ea \u05e4\u05e0\u05d9\u05dd\/\u05d0\u05e8\u05d5\u05d7\u05ea \u05e2\u05e8\u05d1<\/h3>\n

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