{"id":102300,"date":"2016-03-16T19:06:48","date_gmt":"2016-03-17T00:06:48","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/4-internasjonale-ecd-samling-for-pasienter-og-parorende-paris-frankrike\/"},"modified":"2026-05-25T10:07:28","modified_gmt":"2026-05-25T15:07:28","slug":"4-internasjonale-ecd-samling-for-pasienter-og-parorende-paris-frankrike","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/no\/4-internasjonale-ecd-samling-for-pasienter-og-parorende-paris-frankrike\/","title":{"rendered":"4. \u00e5rlige ECD-samling for pasienter og p\u00e5r\u00f8rende Paris, Frankrike"},"content":{"rendered":"

[et_pb_section fb_built=»1″ disabled_on=»off|off|off» _builder_version=»4.27.6″ _module_preset=»default» custom_padding=»20px||0px||false|false» locked=»off» global_colors_info=»{}»][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||false|false» global_colors_info=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_heading title=»@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@» _builder_version=»4.27.6″ _module_preset=»default» custom_margin=»||0px||false|false» custom_padding=»||0px||false|false» hover_enabled=»0″ global_colors_info=»{}» _dynamic_attributes=»title» sticky_enabled=»0″][\/et_pb_heading][\/et_pb_column][\/et_pb_row][et_pb_row module_class=»single-line-buttons » _builder_version=»4.27.6″ _module_preset=»default» width=»65%» width_tablet=»80%» width_phone=»80%» width_last_edited=»on|phone» custom_padding=»0px||0px||false|false» global_colors_info=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»][et_pb_button button_text=»Julien Haroche, MD, PhD» _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||fa||400″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][et_pb_button button_text=»H\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re» _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||fa||900″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][et_pb_button button_text=»Paris, Frankrike» _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||divi||400″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][et_pb_button button_text=»16. september 2016″ _builder_version=»4.27.6″ _module_preset=»default» custom_button=»on» button_text_size=»16px» button_text_color=»#000000″ button_bg_color=»RGBA(255,255,255,0)» button_border_radius=»0px» button_icon=»||fa||400″ button_icon_color=»#35A4BB» button_icon_placement=»left» button_on_hover=»off» global_colors_info=»{}»][\/et_pb_button][\/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=»{}»][et_pb_column type=»4_4″ _builder_version=»4.27.5″ _module_preset=»default» global_colors_info=»{}»][et_pb_image src=»https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/11\/2016-PFG-Group-Photo-Small.jpg» title_text=»2016-pfg-group-photo-small» align=»center» force_fullwidth=»on» module_class=»event-image» _builder_version=»4.27.6″ _module_preset=»default» border_radii=»on|10px|10px|10px|10px» global_colors_info=»{}»][\/et_pb_image][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» text_font_size=»14px» text_line_height=»-0.1em» text_orientation=»center» global_colors_info=»{}»]<\/p>\n

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Paris internasjonale ECD pasient- og familiesamling gruppebilde 2016<\/p>\n<\/div>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=»1″ disabled_on=»off|off|off» _builder_version=»4.27.5″ _module_preset=»default» custom_padding=»0px||||false|false» locked=»off» global_colors_info=»{}»][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||||false|false» 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» custom_margin=»||15px||false|false» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}»]<\/p>\n

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

[\/et_pb_text][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]I alt 63 pasienter og p\u00e5r\u00f8rende, samt en rekke leger, fra 17 forskjellige land deltok p\u00e5 pasient- og p\u00e5r\u00f8rendesamlingen 2016. Deltakerne fikk informasjon om aktuelle studier og fors\u00f8k p\u00e5 ECD, hvordan ECD kan p\u00e5virke ulike organer i kroppen, smertebehandling, skanninger og pleieh\u00e5ndtering. Se arrangementsmaterialet nedenfor for mer informasjon om dette vellykkede arrangementet.[\/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||0px||false|false» global_colors_info=»{}»][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» custom_margin=»||15px||false|false» border_width_bottom=»2px» border_color_bottom=»#35A4BB» global_colors_info=»{}»]<\/p>\n

Presentasjon<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]F\u00f8lgende presentasjoner var inkludert i agendaen for pasient- og familiesamlingen i 2016 i Paris, Frankrike. Bes\u00f8k ECD Global Alliance YouTube-kanal<\/a> for alle publiserte ECD-relaterte videoer<\/a>.[\/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=»{}»][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\n\t\n\t
Presenter<\/th>Presentation Slides<\/th>Presentation Video<\/th>\n<\/tr>\n<\/thead>\n
St\u00e9phane Barete, MD<\/td>ECD Skin Issues<\/a><\/td>ECD Skin Issues<\/a><\/td>\n<\/tr>\n
Giulio Cavalli, MD<\/td>ECD Lung & Heart Issues<\/a><\/td>ECD Lung & Heart Issues<\/a><\/td>\n<\/tr>\n
Carine Courtillot, MD<\/td>Endocrinological Consequences of ECD<\/a><\/td>Endocrinological Consequences of ECD<\/a><\/td>\n<\/tr>\n
Eli Diamond, MD
\n(Presented by Juvianee Estrada-Veras, MD)<\/td>		ECD Neurological Issues<\/a><\/td>ECD Neurological Issues<\/a><\/td>\n<\/tr>\n
Benjamin Durham, MD<\/td>ECD Studies at MSKCC<\/a><\/td>See ECD Studies & Trials Panel<\/td>\n<\/tr>\n
Philippe A. Grenier, MD<\/td>CT of Thoracoabdominal Involvement in Erdheim-Chester Disease<\/a><\/td>See ECD Scan and Radiology Panel.<\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>Importance of Clinical Trials<\/a><\/td>See ECD Studies & Trials Panel<\/td>\n<\/tr>\n
Kenneth L. McClain, MD, PhD<\/td>ECD Studies & Trials \u2013 Texas Children\u2019s Cancer Center<\/a><\/td>See ECD Studies & Trials Panel<\/td>\n<\/tr>\n
Augusto Vaglio, MD, PhD<\/td>Renal & Ureteral Involvement in ECD<\/a><\/td>Renal & Ureteral Involvement in ECD<\/a><\/td>\n<\/tr>\n
Panel participants:Achille Aouba, MD, PhD, Lorenzo Dagna, MD, Juvianee Estrada-Veras, MD,
\nJulien Haroche, MD, PhD, Filip Janku, MD, PhD,
\nKenneth McClain, MD PhD, Augusto Vaglio, MD, PhD<\/td>		ECD Studies & Trials Panel<\/td>ECD Studies & Trials Panel<\/a><\/td>\n<\/tr>\n
Panel participants:Marcus Chen, MD, Phillippe Cluzel, MD PhD,
\nPhillippe Grenier, MD, Phillippe Maksund, MD<\/td>		ECD Scan and Radiology Panel<\/td>ECD Scan and Radiology Panel<\/a><\/td>\n<\/tr>\n
Physician panelists answer patient questions regarding Erdheim-Chester Disease.<\/td>Doctor Question & Answer Panel<\/td>Doctor Question & Answer Panel<\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n

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Fotografier<\/h2>\n

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Paris internasjonale ECD pasient- og familiesamling gruppebilde 2016 Sammendrag fra pasient- og familiesamlingI alt 63 pasienter og p\u00e5r\u00f8rende, samt en rekke leger, fra 17 forskjellige land deltok p\u00e5 pasient- og […]<\/p>\n","protected":false},"author":20,"featured_media":77285,"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":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4862],"tags":[],"class_list":["post-102300","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\/102300","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=102300"}],"version-history":[{"count":22,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102300\/revisions"}],"predecessor-version":[{"id":133158,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102300\/revisions\/133158"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media\/77285"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/media?parent=102300"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/categories?post=102300"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/tags?post=102300"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}