{"id":58471,"date":"2014-11-20T13:28:58","date_gmt":"2014-11-20T19:28:58","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/charlas-comunitarias\/"},"modified":"2026-05-26T07:17:46","modified_gmt":"2026-05-26T12:17:46","slug":"charlas-comunitarias","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/es\/charlas-comunitarias\/","title":{"rendered":"Charlas comunitarias"},"content":{"rendered":"

[et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb background_image=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png\u00bb background_position=\u00bbbottom_center\u00bb background_vertical_offset=\u00bb20%\u00bb custom_padding=\u00bb15px||15px||true|false\u00bb background_last_edited=\u00bbon|desktop\u00bb background_position_tablet=\u00bbbottom_right\u00bb background_position_phone=\u00bbcenter_right\u00bb global_module=\u00bb28071″ global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_heading title=\u00bb@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@\u00bb _builder_version=\u00bb4.27.4″ _dynamic_attributes=\u00bbtitle\u00bb _module_preset=\u00bbdefault\u00bb title_font=\u00bb–et_global_heading_font|300|||||||\u00bb title_text_color=\u00bb#FFFFFF\u00bb title_font_size=\u00bb40px\u00bb custom_margin=\u00bb||3px|||\u00bb title_font_size_tablet=\u00bb\u00bb title_font_size_phone=\u00bb25px\u00bb title_font_size_last_edited=\u00bbon|phone\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_heading][et_pb_button button_url=\u00bbhttps:\/\/www.erdheim-chester.org\/es\/contacta-con-nosotros\/\u00bb button_text=\u00bbContacta con nosotros\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb15px\u00bb button_text_color=\u00bb#C02E43″ button_bg_color=\u00bbrgba(10,22,64,0.53)\u00bb button_border_width=\u00bb0px\u00bb button_icon=\u00bb||divi||400″ button_icon_color=\u00bb#C02E43″ button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb filter_opacity__hover_enabled=\u00bbon|hover\u00bb filter_opacity__hover=\u00bb70%\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row column_structure=\u00bb2_3,1_3″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb2_3″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb6px|||||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Conexi\u00f3n en l\u00ednea con tu comunidad<\/h2>\n

La Alianza Global ECD organiza charlas virtuales en l\u00ednea todos los meses para cualquier persona de la comunidad ECD. Esto incluye a pacientes, cuidadores\/cuidadores, familiares, personal m\u00e9dico, investigadores, etc. <\/p>\n

Quienes se registren en la Alianza Global ECD recibir\u00e1n un correo electr\u00f3nico anunci\u00e1ndoles cada sesi\u00f3n de chat relevante para su funci\u00f3n. Si a\u00fan no te has registrado en el grupo, te recomendamos que lo hagas aqu\u00ed<\/a> para mantenerte conectado e informado. <\/p>\n

Los chats est\u00e1n abiertos a cualquier tema de debate dentro de lo razonable. A menudo se discuten temas como ECD cuestiones de diagn\u00f3stico, tratamientos, pruebas, m\u00e9dicos expertos, s\u00edntomas, efectos secundarios de los tratamientos y, a veces, simplemente discusiones amistosas sobre cosas agradables que ocurren en la vida de los participantes. La mayor\u00eda de los que asisten a las sesiones han encontrado conexiones y siguen manteniendo correspondencia fuera de las sesiones de chat. Las reuniones tambi\u00e9n proporcionan una estructura de apoyo para quienes est\u00e1n interesados en aprender todo lo que puedan sobre ECD y proporcionarse apoyo mutuo. <\/a><\/p>\n

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Conexi\u00f3n de duelo<\/h3>\n

La p\u00e9rdida de un ser querido a causa de la enfermedad de Erdheim-Chester es un viaje incre\u00edblemente doloroso, y nadie deber\u00eda tener que pasarlo solo. Aunque ya no programamos Charlas de duelo con antelaci\u00f3n, estamos aqu\u00ed para apoyarte cuando m\u00e1s lo necesites. Ponte en contacto con nuestro navegador de pacientes para obtener m\u00e1s informaci\u00f3n.<\/p>\n

[\/et_pb_text][et_pb_button button_url=\u00bbmailto:Belinda.Cobb@erdheim-chester.org\u00bb button_text=\u00bbContacta con nosotros\u00bb button_alignment=\u00bbcenter\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_color=\u00bb#35A4BB\u00bb button_bg_color=\u00bb#FFFFFF\u00bb button_border_radius=\u00bb8px\u00bb button_use_icon=\u00bboff\u00bb custom_padding=\u00bb10px||10px||true|false\u00bb custom_css_main_element=\u00bbwidth: 100%;\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ module_class=\u00bbchat-sessions\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#0A1640″ global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_text_color=\u00bb#FFFFFF\u00bb background_layout=\u00bbdark\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Grupos de habla inglesa<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_3,1_3,1_3″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/04\/Peer-to-Peer-Chat.png\u00bb title_text=\u00bbChat entre iguales\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb1.8em\u00bb text_orientation=\u00bbcenter\u00bb custom_css_main_element=\u00bbcolor: #ffffff;\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

New events coming soon.<\/div>\n

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New events coming soon.<\/div>\n

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Grupos internacionales<\/h2>\n

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Chat de la Comunidad Canadiense<\/h3>\n

[\/et_pb_text][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/08\/download-5.png\u00bb title_text=\u00bbdescargar (5)\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb1.8em\u00bb text_orientation=\u00bbcenter\u00bb custom_css_main_element=\u00bbcolor: #ffffff;\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

New events coming soon.<\/div>\n

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Chat para los que hablan espa\u00f1ol<\/h3>\n

[\/et_pb_text][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/04\/Spanish-Chat.png\u00bb title_text=\u00bbChat en espa\u00f1ol\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb1.8em\u00bb text_orientation=\u00bbcenter\u00bb custom_css_main_element=\u00bbcolor: #ffffff;\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

New events coming soon.<\/div>\n

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Chat de Australia y Nueva Zelanda<\/h3>\n

[\/et_pb_text][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/05\/australia-june.png\u00bb title_text=\u00bbAustralia, junio\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb hover_enabled=\u00bb0″ border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb1.8em\u00bb text_orientation=\u00bbcenter\u00bb custom_css_main_element=\u00bbcolor: #ffffff;\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

New events coming soon.<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_3,1_3,1_3″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_3″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_layout=\u00bbdark\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Chat de la comunidad italiana<\/span><\/span><\/span><\/h3>\n

[\/et_pb_text][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/04\/Italian-Chat.png\u00bb title_text=\u00bbChat italiano\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb1.8em\u00bb text_orientation=\u00bbcenter\u00bb custom_css_main_element=\u00bbcolor: #ffffff;\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

New events coming soon.<\/div>\n

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Chat franc\u00f3fono<\/h3>\n

[\/et_pb_text][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/04\/French-Chat.png\u00bb title_text=\u00bbChat en franc\u00e9s\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb1.8em\u00bb text_orientation=\u00bbcenter\u00bb custom_css_main_element=\u00bbcolor: #ffffff;\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

New events coming soon.<\/div>\n

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Deutschsprachiger Chat<\/h3>\n

[\/et_pb_text][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/04\/German-Chat.png\u00bb title_text=\u00bbChat alem\u00e1n\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|8px|8px|8px|8px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb18px\u00bb text_line_height=\u00bb1.8em\u00bb text_orientation=\u00bbcenter\u00bb custom_css_main_element=\u00bbcolor: #ffffff;\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

New events coming soon.<\/div>\n

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Anteriormente, el ECDGA realizaba chats online en directo para la comunidad. Los res\u00famenes de las sesiones de chat anteriores se recopilaron y archivaron aqu\u00ed<\/a>. <\/p>\n

Lee nuestra Pol\u00edtica de participaci\u00f3n virtual<\/a> antes de unirte a una reuni\u00f3n o seminario web de la Alianza Global ECD.<\/p>\n

NOTA: Comprueba tu zona horaria aqu\u00ed: Convertidor de husos<\/a> horarios.<\/p>\n

No<\/u> habr\u00e1 ning\u00fan profesional m\u00e9dico asistiendo a estas llamadas. Cada paciente es \u00fanico y aqu\u00ed no se pueden ofrecer consejos m\u00e9dicos; animamos a que todas las ideas se compartan con los m\u00e9dicos. Lee nuestra Pol\u00edtica de participaci\u00f3n virtual.<\/a> <\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Conexi\u00f3n en l\u00ednea con tu comunidad La Alianza Global ECD organiza charlas virtuales en l\u00ednea todos los meses para cualquier persona de la comunidad ECD. Esto incluye a pacientes, cuidadores\/cuidadores, […]<\/p>\n","protected":false},"author":14,"featured_media":21079,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","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":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-58471","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/58471","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=58471"}],"version-history":[{"count":15,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/58471\/revisions"}],"predecessor-version":[{"id":134196,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/58471\/revisions\/134196"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/21079"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=58471"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}