{"id":52863,"date":"2015-09-09T15:22:45","date_gmt":"2015-09-09T20:22:45","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/recursos\/"},"modified":"2026-03-24T10:14:05","modified_gmt":"2026-03-24T15:14:05","slug":"recursos","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/es\/recursos\/","title":{"rendered":"Recursos"},"content":{"rendered":"

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Recursos materiales<\/h2>\n

Estos recursos en l\u00ednea se enumeran para proporcionar consejos y servicios potencialmente \u00fatiles ofrecidos por empresas sanitarias, organizaciones sin \u00e1nimo de lucro y otros grupos de defensa.<\/p>\n

La mayor\u00eda de estos servicios se ofrecen a personas que viven en EEUU. Si conoces otros recursos que deber\u00edan figurar en la lista para EEUU u otros pa\u00edses, ponte en contacto con la Alianza Global ECD. <\/p>\n

Las directrices m\u00e1s recientes y expertas para la atenci\u00f3n y el tratamiento de ECD pueden encontrarse en Neoplasias histioc\u00edticas – Detalle de las directrices (nccn.org)<\/a>, donde tendr\u00e1s que hacer clic en \u00abDirectrices de la NCCN\u00bb. El sitio requiere la creaci\u00f3n de una cuenta gratuita para acceder al documento, pero merece la pena. <\/p>\n

Adem\u00e1s, Cuestiones de supervivencia en pacientes adultos con neoplasias histioc\u00edticas<\/a> ofrece orientaci\u00f3n sobre el manejo de algunas de las complicaciones y retos que puede encontrar alguien que vive con ECD.<\/p>\n

Los expertos m\u00e9dicos en ECD de nuestra comunidad han ayudado a elaborar dos tipos de folletos con fines de educaci\u00f3n general y concienciaci\u00f3n. El folleto para pacientes est\u00e1 disponible para ayudar a los nuevos miembros de la comunidad a comprender los aspectos b\u00e1sicos de la ECD. El folleto m\u00e9dico est\u00e1 disponible para compartirlo con su equipo asistencial o con cualquier profesional sanitario. [\/et_pb_text][et_pb_button button_url=\u00bbhttps:\/\/www.erdheim-chester.org\/es\/solicitar-un-folleto\/\u00bb button_text=\u00bbSolicitar un folleto\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\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 background_color=\u00bbrgba(200,200,200,0.3)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row module_class=\u00bbresource-buttons\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb||0px||false|false\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″][et_pb_button button_url=\u00bb#medication\u00bb button_text=\u00bbAyuda con la medicaci\u00f3n\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb button_bg_color__hover_enabled=\u00bbon|hover\u00bb button_bg_color__hover=\u00bbRGBA(255,255,255,0)\u00bb button_bg_enable_color__hover=\u00bbon\u00bb][\/et_pb_button][et_pb_button button_url=\u00bb#insurance\u00bb button_text=\u00bbSeguro y asistencia financiera\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_url=\u00bb#travel\u00bb button_text=\u00bbAsistencia en viaje\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_url=\u00bb#partner\u00bb button_text=\u00bbOrganizaciones asociadas de defensa y apoyo\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_url=\u00bb#general\u00bb button_text=\u00bbRecursos generales\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_url=\u00bb#depression\u00bb button_text=\u00bbAyuda para la depresi\u00f3n y la ansiedad\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_url=\u00bb#apv\u00bb button_text=\u00bbRecursos APV-D\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00bbmedication\u00bb module_class=\u00bbblog-grid\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb10px||||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=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Ayuda con la medicaci\u00f3n<\/h3>\n

Encontrar una soluci\u00f3n a sus necesidades de medicaci\u00f3n con receta puede ser un reto. La siguiente lista incluye programas de medicamentos que podr\u00edan ayudarle a obtenerlos a un precio asequible. Consulte tambi\u00e9n la ayuda para pagadores en nuestra p\u00e1gina web. <\/span>Presentaci\u00f3n de recursos de los pagadores<\/a>.<\/span><\/p>\n

[\/et_pb_text][dpdfg_filtergrid include_categories=\u00bb296″ thumbnail_action=\u00bbnone\u00bb show_thumbnail=\u00bboff\u00bb use_overlay=\u00bboff\u00bb show_post_meta=\u00bboff\u00bb show_content=\u00bbon\u00bb content_length=\u00bbfull\u00bb read_more=\u00bbon\u00bb read_more_text=\u00bbVer\u00bb custom_content_container=\u00bboff\u00bb show_filters=\u00bboff\u00bb filter_layout=\u00bbselect\u00bb show_pagination=\u00bboff\u00bb items_width=\u00bb24%\u00bb module_class=\u00bbmy-dfg\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb dpdfg_entry_title_text_align=\u00bbleft\u00bb dpdfg_entry_summary_text_align=\u00bbleft\u00bb dpdfg_filters_active_text_color=\u00bb#C02E43″ custom_read_more_button=\u00bbon\u00bb read_more_button_text_size=\u00bb13px\u00bb read_more_button_text_color=\u00bb#35A4BB\u00bb read_more_button_bg_color=\u00bbrgba(53,164,187,0.15)\u00bb read_more_button_icon=\u00bb$||divi||400″ read_more_button_on_hover=\u00bboff\u00bb read_more_button_alignment=\u00bbleft\u00bb read_more_button_custom_padding=\u00bb0px|34px|0px|0px|true|false\u00bb border_width_all=\u00bb0px\u00bb global_colors_info=\u00bb{}\u00bb read_more_button_text_color__hover=\u00bb#FFFFFF\u00bb read_more_button_text_color__hover_enabled=\u00bbon|hover\u00bb read_more_button_bg_color__hover=\u00bb#35A4BB\u00bb read_more_button_bg_color__hover_enabled=\u00bbon|hover\u00bb][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00bbinsurance\u00bb _builder_version=\u00bb4.27.6″ _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_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Seguro y asistencia financiera<\/h3>\n

Puedes obtener ayuda econ\u00f3mica y sanitaria a trav\u00e9s de las siguientes fuentes.<\/span><\/p>\n

[\/et_pb_text][dpdfg_filtergrid include_categories=\u00bb297″ thumbnail_action=\u00bbnone\u00bb show_thumbnail=\u00bboff\u00bb use_overlay=\u00bboff\u00bb show_post_meta=\u00bboff\u00bb show_content=\u00bbon\u00bb content_length=\u00bbfull\u00bb read_more=\u00bbon\u00bb read_more_text=\u00bbVer\u00bb show_filters=\u00bboff\u00bb show_pagination=\u00bboff\u00bb items_width=\u00bb24%\u00bb module_class=\u00bbblog-grid\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb dpdfg_entry_title_text_align=\u00bbleft\u00bb dpdfg_entry_summary_text_align=\u00bbleft\u00bb custom_read_more_button=\u00bbon\u00bb read_more_button_text_size=\u00bb13px\u00bb read_more_button_text_color=\u00bb#35A4BB\u00bb read_more_button_bg_color=\u00bbrgba(53,164,187,0.15)\u00bb read_more_button_icon=\u00bb$||divi||400″ read_more_button_on_hover=\u00bboff\u00bb read_more_button_alignment=\u00bbleft\u00bb read_more_button_custom_padding=\u00bb0px|34px|0px|0px|true|false\u00bb border_width_all=\u00bb0px\u00bb global_colors_info=\u00bb{}\u00bb read_more_button_text_color__hover=\u00bb#FFFFFF\u00bb read_more_button_text_color__hover_enabled=\u00bbon|hover\u00bb read_more_button_bg_color__hover=\u00bb#35A4BB\u00bb read_more_button_bg_color__hover_enabled=\u00bbon|hover\u00bb][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00bbtravel\u00bb _builder_version=\u00bb4.27.6″ _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_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Asistencia en viaje<\/h3>\n

[\/et_pb_text][dpdfg_filtergrid include_categories=\u00bb298″ thumbnail_action=\u00bbnone\u00bb show_thumbnail=\u00bboff\u00bb use_overlay=\u00bboff\u00bb show_post_meta=\u00bboff\u00bb show_content=\u00bbon\u00bb content_length=\u00bbfull\u00bb read_more=\u00bbon\u00bb read_more_text=\u00bbVer\u00bb show_filters=\u00bboff\u00bb show_pagination=\u00bboff\u00bb items_width=\u00bb24%\u00bb module_class=\u00bbblog-grid\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb dpdfg_entry_title_text_align=\u00bbleft\u00bb dpdfg_entry_summary_text_align=\u00bbleft\u00bb custom_read_more_button=\u00bbon\u00bb read_more_button_text_size=\u00bb13px\u00bb read_more_button_text_color=\u00bb#35A4BB\u00bb read_more_button_bg_color=\u00bbrgba(53,164,187,0.15)\u00bb read_more_button_icon=\u00bb$||divi||400″ read_more_button_on_hover=\u00bboff\u00bb read_more_button_alignment=\u00bbleft\u00bb read_more_button_custom_padding=\u00bb0px|34px|0px|0px|true|false\u00bb border_width_all=\u00bb0px\u00bb global_colors_info=\u00bb{}\u00bb read_more_button_text_color__hover=\u00bb#FFFFFF\u00bb read_more_button_text_color__hover_enabled=\u00bbon|hover\u00bb read_more_button_bg_color__hover=\u00bb#35A4BB\u00bb read_more_button_bg_color__hover_enabled=\u00bbon|hover\u00bb][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00bbpartner\u00bb _builder_version=\u00bb4.27.6″ _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_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Organizaciones asociadas de defensa y apoyo<\/h3>\n

Los siguientes grupos de defensa atienden a trastornos de histiocitosis o a enfermedades raras en general y pueden serte de ayuda en tu viaje con ECD. <\/span>[\/et_pb_text][dpdfg_filtergrid include_categories=\u00bb299″ post_number=\u00bb100″ order=\u00bbASC\u00bb orderby=\u00bbtitle\u00bb thumbnail_action=\u00bbnone\u00bb show_thumbnail=\u00bboff\u00bb use_overlay=\u00bboff\u00bb show_post_meta=\u00bboff\u00bb show_content=\u00bbon\u00bb content_length=\u00bbfull\u00bb read_more=\u00bbon\u00bb read_more_text=\u00bbVer\u00bb show_filters=\u00bboff\u00bb show_pagination=\u00bboff\u00bb items_width=\u00bb24%\u00bb module_class=\u00bbblog-grid\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb dpdfg_entry_title_text_align=\u00bbleft\u00bb dpdfg_entry_summary_text_align=\u00bbleft\u00bb custom_read_more_button=\u00bbon\u00bb read_more_button_text_size=\u00bb13px\u00bb read_more_button_text_color=\u00bb#35A4BB\u00bb read_more_button_bg_color=\u00bbrgba(53,164,187,0.15)\u00bb read_more_button_icon=\u00bb$||divi||400″ read_more_button_on_hover=\u00bboff\u00bb read_more_button_alignment=\u00bbleft\u00bb read_more_button_custom_padding=\u00bb0px|34px|0px|0px|true|false\u00bb border_width_all=\u00bb0px\u00bb global_colors_info=\u00bb{}\u00bb read_more_button_text_color__hover=\u00bb#FFFFFF\u00bb read_more_button_text_color__hover_enabled=\u00bbon|hover\u00bb read_more_button_bg_color__hover=\u00bb#35A4BB\u00bb read_more_button_bg_color__hover_enabled=\u00bbon|hover\u00bb][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00bbgeneral\u00bb _builder_version=\u00bb4.27.6″ _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_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Recursos generales<\/h3>\n

[\/et_pb_text][dpdfg_filtergrid include_categories=\u00bb300″ thumbnail_action=\u00bbnone\u00bb show_thumbnail=\u00bboff\u00bb use_overlay=\u00bboff\u00bb show_post_meta=\u00bboff\u00bb show_content=\u00bbon\u00bb content_length=\u00bbfull\u00bb read_more=\u00bbon\u00bb read_more_text=\u00bbVer\u00bb show_filters=\u00bboff\u00bb show_pagination=\u00bboff\u00bb items_width=\u00bb24%\u00bb module_class=\u00bbblog-grid\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb dpdfg_entry_title_text_align=\u00bbleft\u00bb dpdfg_entry_summary_text_align=\u00bbleft\u00bb custom_read_more_button=\u00bbon\u00bb read_more_button_text_size=\u00bb13px\u00bb read_more_button_text_color=\u00bb#35A4BB\u00bb read_more_button_bg_color=\u00bbrgba(53,164,187,0.15)\u00bb read_more_button_icon=\u00bb$||divi||400″ read_more_button_on_hover=\u00bboff\u00bb read_more_button_alignment=\u00bbleft\u00bb read_more_button_custom_padding=\u00bb0px|34px|0px|0px|true|false\u00bb border_width_all=\u00bb0px\u00bb global_colors_info=\u00bb{}\u00bb read_more_button_text_color__hover=\u00bb#FFFFFF\u00bb read_more_button_text_color__hover_enabled=\u00bbon|hover\u00bb read_more_button_bg_color__hover=\u00bb#35A4BB\u00bb read_more_button_bg_color__hover_enabled=\u00bbon|hover\u00bb][\/dpdfg_filtergrid][\/et_pb_column][\/et_pb_row][et_pb_row module_id=\u00bbdepression\u00bb _builder_version=\u00bb4.27.6″ _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_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Ayuda para la depresi\u00f3n y la ansiedad<\/h3>\n

Si crees que puedes hacerte da\u00f1o a ti mismo o a otra persona, llama, env\u00eda un mensaje de texto o chatea al 988, para ponerte en contacto con un consejero de crisis de la L\u00ednea Nacional de Prevenci\u00f3n de Suicidios y Crisis. Ayuda 24 horas al d\u00eda, 7 d\u00edas a la semana. 988 L\u00ednea de vida<\/a><\/p>\n

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Recursos APV-D<\/h3>\n

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Recursos materiales Estos recursos en l\u00ednea se enumeran para proporcionar consejos y servicios potencialmente \u00fatiles ofrecidos por empresas sanitarias, organizaciones sin \u00e1nimo de lucro y otros grupos de defensa. La […]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","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-52863","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/52863","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=52863"}],"version-history":[{"count":25,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/52863\/revisions"}],"predecessor-version":[{"id":122305,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/52863\/revisions\/122305"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=52863"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}