[et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb20px||0px||false|false\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_heading title=\u00bb@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||0px||false|false\u00bb custom_padding=\u00bb||0px||false|false\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb _dynamic_attributes=\u00bbtitle\u00bb sticky_enabled=\u00bb0″][\/et_pb_heading][\/et_pb_column][\/et_pb_row][et_pb_row module_class=\u00bbsingle-line-buttons \u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_button button_text=\u00bbLorenzo Dagna, MD, FACP\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||fa||400″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_text=\u00bbIRCCS San Raffaele Scientific Institute\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||fa||900″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_text=\u00bbMil\u00e1n, Italia\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||divi||400″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_text=\u00bb12 de julio de 2019″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||fa||400″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb0px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2017\/01\/BW-Family.jpg\u00bb title_text=\u00bbFamilia B&W\u00bb align=\u00bbcenter\u00bb force_fullwidth=\u00bbon\u00bb module_class=\u00bbevent-image\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|10px|10px|10px|10px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb14px\u00bb text_line_height=\u00bb-0.1em\u00bb text_orientation=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n
Foto de grupo de la Reuni\u00f3n Internacional de Pacientes y Familias de ECD en Mil\u00e1n 2019<\/p>\n<\/div>\n<\/div>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||||false|false\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb10px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb width__hover_enabled=\u00bboff|desktop\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||15px||false|false\u00bb border_width_bottom=\u00bb2px\u00bb border_color_bottom=\u00bb#35A4BB\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n
[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n
Se anima a todos los pacientes y seres queridos interesados en aprender m\u00e1s sobre la ECD<\/a> y en conocer a otras familias a asistir a los siguientes eventos<\/a>. La cuota de inscripci\u00f3n para el evento de 2 d\u00edas incluye el acceso a todas las sesiones de la conferencia, la cena de recepci\u00f3n, as\u00ed como el almuerzo y refrigerios ligeros durante los descansos de la conferencia. Los siguientes horarios de reuni\u00f3n est\u00e1n sujetos a cambios. <\/p>\n El Hotel Rafael es el lugar recomendado para su alojamiento durante el evento. Este hotel est\u00e1 convenientemente situado frente al patio de los espacios de reuni\u00f3n del hospital. La ECDGA no ha contratado un bloque de habitaciones para este hotel; por lo tanto, le recomendamos que reserve su habitaci\u00f3n lo antes posible para garantizar la disponibilidad. Consulte el sitio web del hotel para obtener m\u00e1s informaci\u00f3n y realizar una reserva<\/a>. <\/p>\n Todos los eventos<\/a> se celebrar\u00e1n en<\/strong> [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb||0px||false|false\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||15px||false|false\u00bb border_width_bottom=\u00bb2px\u00bb border_color_bottom=\u00bb#35A4BB\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n [\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Las siguientes presentaciones se han a\u00f1adido con la esperanza de que ayuden a pacientes, familias y m\u00e9dicos interesados en aprender m\u00e1s sobre ECD<\/a>. La ECDGA agradece los esfuerzos y contribuciones realizados por la comunidad m\u00e9dica para mejorar la atenci\u00f3n a los pacientes con ECD.[\/et_pb_text][et_pb_text module_class=\u00bbevent-table\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_2,1_2″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb0px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n \u201cFue incre\u00edble ser testigo de la dedicaci\u00f3n y el compromiso que estos m\u00e9dicos mostraron en relaci\u00f3n con el diagn\u00f3stico, el tratamiento y los esfuerzos de investigaci\u00f3n relativos a la ECD. Estoy agradecida por esta oportunidad \u00fanica\u201d.<\/em><\/p>\n \u2013 Leretha R. Thomas, cuidadora de un paciente con ECD<\/strong><\/p>\n [\/et_pb_text][\/et_pb_column][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n \u201cHe trabajado en el sector sanitario durante m\u00e1s de 20 a\u00f1os y nunca hab\u00eda visto ni experimentado un grupo de profesionales de la salud y voluntarios tan atento y entregado\u201d.<\/em><\/p>\n \u2013 Paciente con ECD asistente<\/strong><\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" Foto de grupo de la Reuni\u00f3n Internacional de Pacientes y Familias de ECD en Mil\u00e1n 2019 Resumen del Encuentro de Pacientes y FamiliasSe anima a todos los pacientes y seres […]<\/p>\n","protected":false},"author":20,"featured_media":102950,"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":[4860],"tags":[],"class_list":["post-102356","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-reunion-de-pacientes-y-familiares"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102356","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=102356"}],"version-history":[{"count":33,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102356\/revisions"}],"predecessor-version":[{"id":133480,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102356\/revisions\/133480"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/102950"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=102356"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=102356"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=102356"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
IRCCS San Raffaele Scientific Institute<\/strong>
Universidad Vita-Salute San Raffaele
Via Olgettina, 60
I-20132 Mil\u00e1n \u2013 Italia<\/p>\nPresentaci\u00f3n<\/h2>\n
\n\n
\n\t \nDATE<\/th> TIME<\/th> EVENT<\/th> DESCRIPTION<\/th>\n<\/tr>\n<\/thead>\n \n\t 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 \n\t 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 \n\t 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=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||15px||false|false\u00bb border_width_bottom=\u00bb2px\u00bb border_color_bottom=\u00bb#35A4BB\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\nExperiencias de los asistentes<\/h2>\n