{"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":"2026-05-25T10:22:08","modified_gmt":"2026-05-25T15:22:08","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":"

[et_pb_section fb_built=»1″ _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=»Lorenzo Dagna, MD, FACP» _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=»IRCCS San Raffaele vitenskapelige institutt» _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=»Milano, Italia» _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=»12. juli 2019″ _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\/2017\/01\/BW-Family.jpg» title_text=»B&W-familie» 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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Gruppebilde fra det internasjonale pasient- og p\u00e5r\u00f8rendetreffet for ECD i Milano 2019<\/p>\n<\/div>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=»1″ _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=»{}»]<\/p>\n

Alle pasienter og p\u00e5r\u00f8rende som er interessert i \u00e5 l\u00e6re mer om ECD<\/a> og m\u00f8te andre familier, oppfordres til \u00e5 delta p\u00e5 f\u00f8lgende arrangementer<\/a>. P\u00e5meldingsavgiften for det to dager lange arrangementet inkluderer tilgang til alle konferansesesjoner, mottakelse med middag, samt lunsj og lett servering i pausene. De oppf\u00f8rte tidspunktene for m\u00f8tene kan bli endret. <\/p>\n

Hotel Rafael er det anbefalte stedet for overnatting under arrangementet. Dette hotellet ligger praktisk til over g\u00e5rdsplassen, i umiddelbar n\u00e6rhet til sykehusets m\u00f8telokaler. Det er ingen romblokk avtalt av ECDGA for dette hotellet; derfor anbefaler vi \u00e5 bestille rom s\u00e5 snart som mulig for \u00e5 sikre tilgjengelighet. Bes\u00f8k hotellets nettside for mer informasjon og for \u00e5 gj\u00f8re en reservasjon<\/a>. <\/p>\n

Alle arrangementer<\/a> vil bli avholdt ved<\/strong>
IRCCS San Raffaele Scientific Institute<\/strong>
Vita-Salute San Raffaele University
Via Olgettina, 60
I-20132 Milano \u2013 Italia<\/p>\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=»{}»]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=»{}»]\n\n\n\n\t\n\n\t\n\t\n\t
DATE<\/th>TIME<\/th>EVENT<\/th>DESCRIPTION<\/th>\n<\/tr>\n<\/thead>\n
Thursday
\nJuly 11, 2019
\n<\/td>		3 PM TO 5 PM<\/td>Group Activity<\/td>A group activity may be scheduled for this time frame to allow more social time for families in attendance. This opportunity is still under consideration and will be announced once plans are firm.<\/td>\n<\/tr>\n
Thursday
\nJuly 11, 2019
\n<\/td>		6 PM to 8 PM<\/td>Welcome Social<\/td>All event attendees are welcome to attend this social event to encourage connections between the families and medical professionals. Hor d\u2019oeuvres will be served.<\/td>\n<\/tr>\n
Friday
\nJuly 12, 2019
\n(Registration 8 \u2013 9 a.m.)<\/td>		9 AM to 5 PM<\/td>Patient & Family Gathering<\/td>Medical speakers experienced in ECD treatment will present the latest ECD care information to families and other treating physicians.<\/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=»{}»][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

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=»{}»][et_pb_column type=»1_2″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]<\/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

[\/et_pb_text][\/et_pb_column][et_pb_column type=»1_2″ _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»][et_pb_text _builder_version=»4.27.6″ _module_preset=»default» global_colors_info=»{}»]<\/p>\n

\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_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Gruppebilde fra det internasjonale pasient- og p\u00e5r\u00f8rendetreffet for ECD i Milano 2019 Sammendrag fra pasient- og familiesamlingAlle pasienter og p\u00e5r\u00f8rende som er interessert i \u00e5 l\u00e6re mer om ECD og […]<\/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":"","_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-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":22,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102360\/revisions"}],"predecessor-version":[{"id":133487,"href":"https:\/\/www.erdheim-chester.org\/no\/wp-json\/wp\/v2\/posts\/102360\/revisions\/133487"}],"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}]}}