{"id":102360,"date":"2019-01-11T19:47:40","date_gmt":"2019-01-12T01:47:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/7-internasjonale-ecd-samling-for-pasienter-og-parorende-milano-italia\/"},"modified":"2026-06-18T08:45:41","modified_gmt":"2026-06-18T13:45:41","slug":"7-internasjonale-ecd-samling-for-pasienter-og-parorende-milano-italia","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/no\/7-internasjonale-ecd-samling-for-pasienter-og-parorende-milano-italia\/","title":{"rendered":"7. \u00e5rlige ECD-samling for pasienter og p\u00e5r\u00f8rende Milano, Italia"},"content":{"rendered":"

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Gruppebilde fra det internasjonale pasient- og p\u00e5r\u00f8rendetreffet for ECD i Milano 2019<\/p>\n<\/div>\n<\/div>\n

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Sammendrag fra pasient- og familiesamling<\/h2>\n

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Pasient- og p\u00e5r\u00f8rendetreffet (PFG) i 2019 samlet 49 pasienter og p\u00e5r\u00f8rende fra 10 land. Pasient- og p\u00e5r\u00f8rendemilj\u00f8et ble supplert av 38 klinikere og forskere som brenner for \u00e5 ta vare p\u00e5 pasienter og l\u00e6re mer om Erdheim-Chester Disease. Ti klinikere\/forskere holdt foredrag om ECD og st\u00f8ttebehov knyttet til ECD. En festmiddag med alle deltakere ble avholdt, noe som ga tid til fellesskap og anerkjennelse av samfunnsledere som vier sin tid og sine ressurser til \u00e5 hjelpe ECD-milj\u00f8et. Se informasjonen nedenfor for mer om PFG-aktivitetene og presentasjonene, samt bilder fra konferansen. <\/p>\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=»10px||20px||false|false» locked=»off» global_colors_info=»{}» width__hover_enabled=»off|desktop» theme_builder_area=»post_content»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}» theme_builder_area=»post_content»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}» theme_builder_area=»post_content»]<\/p>\n

Programmer med dagsorden for samlingen<\/h2>\n

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Presentasjon<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}» theme_builder_area=»post_content»]F\u00f8lgende presentasjoner er lagt til i h\u00e5p om at de vil hjelpe pasienter, familier og leger som er interessert i \u00e5 l\u00e6re mer om ECD<\/a>. ECDGA er takknemlig for innsatsen og bidragene fra det medisinske milj\u00f8et for \u00e5 forbedre omsorgen for ECD-pasienter.[\/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
\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» global_colors_info=»{}» theme_builder_area=»post_content»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}» theme_builder_area=»post_content»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» custom_margin=»||15px||false|false» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}» theme_builder_area=»post_content»]<\/p>\n

Deltakernes opplevelser<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=»1_2,1_2″ _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» global_colors_info=»{}» theme_builder_area=»post_content»][et_pb_column type=»1_2″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}» theme_builder_area=»post_content»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}» theme_builder_area=»post_content»]<\/p>\n

\u00abDet var utrolig \u00e5 v\u00e6re vitne til engasjementet og dedikasjonen disse legene viste n\u00e5r det gjelder diagnostisering, behandling og forskningsinnsats knyttet til ECD. Jeg er takknemlig for denne sjeldne muligheten.\u00bb<\/em><\/p>\n

\u2013 Leretha R. Thomas, ECD-p\u00e5r\u00f8rende<\/strong><\/p>\n

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\u00abJeg har jobbet i helsevesenet i over 20 \u00e5r og har aldri sett eller opplevd en s\u00e5 omsorgsfull og dedikert gruppe helsepersonell og frivillige!\u00bb<\/em><\/p>\n

\u2013 ECD-pasient til stede<\/strong><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=»4.27.5″ _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=»{}» theme_builder_area=»post_content»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}» theme_builder_area=»post_content»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» custom_margin=»||15px||false|false» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}» theme_builder_area=»post_content»]<\/p>\n

Fotografier<\/h2>\n

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Medisinsk symposium<\/h3>\n

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Bilder fra mottakelsen\/middagen<\/h3>\n

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Gruppebilde fra det internasjonale pasient- og p\u00e5r\u00f8rendetreffet for ECD i Milano 2019 Sammendrag fra pasient- og familiesamlingPasient- og p\u00e5r\u00f8rendetreffet (PFG) i 2019 samlet 49 pasienter og p\u00e5r\u00f8rende fra 10 land. […]<\/p>\n","protected":false},"author":20,"featured_media":102948,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4862],"tags":[],"class_list":["post-102360","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-pasient-og-familiesamlinger"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102360","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/comments?post=102360"}],"version-history":[{"count":7,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102360\/revisions"}],"predecessor-version":[{"id":161065,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102360\/revisions\/161065"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/102948"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=102360"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/categories?post=102360"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/tags?post=102360"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}