{"id":49059,"date":"2021-10-29T12:50:22","date_gmt":"2021-10-29T17:50:22","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/quienes-somos\/"},"modified":"2025-09-27T11:50:42","modified_gmt":"2025-09-27T16:50:42","slug":"quienes-somos","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/es\/quienes-somos\/","title":{"rendered":"Qui\u00e9nes somos"},"content":{"rendered":"

[et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.27.4″ _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=\u00bb0px||0px||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_dmb_breadcrumbs _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb body_text_color=\u00bb#FFFFFF\u00bb body_font_size=\u00bb12px\u00bb link_text_color=\u00bb#35A4BB\u00bb custom_margin=\u00bb||5px||false|false\u00bb custom_padding=\u00bb||0px||false|false\u00bb body_font_size_tablet=\u00bb12px\u00bb body_font_size_phone=\u00bb10px\u00bb body_font_size_last_edited=\u00bbon|desktop\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_dmb_breadcrumbs][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″ admin_label=\u00bbsection\u00bb _builder_version=\u00bb4.27.4″ hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb custom_padding=\u00bb||0px||false|false\u00bb sticky_enabled=\u00bb0″][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 global_colors_info=\u00bb{}\u00bb]<\/p>\n

Nuestra misi\u00f3n<\/h2>\n

La Alianza Global ECD se dedica a la concienciaci\u00f3n, el apoyo, la educaci\u00f3n y la investigaci\u00f3n relacionados con Erdheim-Chester la enfermedad. La organizaci\u00f3n trabaja con la comunidad mundial para lograr lo siguiente: <\/p>\n

Sensibilizar sobre ECD.<\/strong> Nos esforzamos por facilitar el diagn\u00f3stico precoz de la enfermedad y estimular la preocupaci\u00f3n y los esfuerzos por aumentar los conocimientos sobre la enfermedad y los tratamientos.<\/p>\n

Proporcionar apoyo a los afectados por la enfermedad.<\/strong> Seguiremos buscando todas las v\u00edas para aliviar en lo posible la carga de los afectados por ECD. Proporcionar informaci\u00f3n, derivaciones y contacto personal con otros afectados por la enfermedad son s\u00f3lo algunos de los apoyos que se ofrecen a trav\u00e9s de ECDGA. <\/p>\n

Defender y apoyar los programas de investigaci\u00f3n.<\/strong> El objetivo de dichos programas de investigaci\u00f3n es conocer mejor (a) la enfermedad, (b) los tratamientos eficaces para la enfermedad, (c) las posibles curas, y\/o (d) las v\u00edas para prevenir la enfermedad por completo. Esto incluir\u00e1, entre otras cosas, la colaboraci\u00f3n con el personal m\u00e9dico, el personal investigador y otras organizaciones sanitarias para ayudar a definir las \u00e1reas en las que se necesita investigaci\u00f3n, financiar la investigaci\u00f3n y ayudar a promover los beneficios de la investigaci\u00f3n de ECD entre otros organismos sanitarios. La alianza tambi\u00e9n servir\u00e1 de conducto para transferir la informaci\u00f3n necesaria de sus miembros a la comunidad investigadora seg\u00fan las directrices documentadas. <\/p>\n

[\/et_pb_text][\/et_pb_column][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\/2019\/04\/kathy.jpg\u00bb title_text=\u00bbkathy\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||10px||false|false\u00bb custom_padding=\u00bb||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_orientation=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Kathy Brewer, Fundadora y Presidenta<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb2_3,1_3″ _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||||false|false\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 global_colors_info=\u00bb{}\u00bb]<\/p>\n

Compartir material educativo y facilitar el intercambio de informaci\u00f3n entre las partes interesadas en relaci\u00f3n con ECD.<\/strong> Esto incluye proporcionar informaci\u00f3n actual, fiable y objetiva relacionada con ECD a pacientes, seres queridos, personal m\u00e9dico, personal investigador, medios de comunicaci\u00f3n y otras organizaciones. Tambi\u00e9n incluir\u00e1 la promoci\u00f3n, el patrocinio y la realizaci\u00f3n de talleres, simposios y otras reuniones para promover los objetivos de la alianza. <\/p>\n

Una d\u00e9cada de impacto<\/h3>\n

Para la mayor\u00eda de las personas, una experiencia con Erdheim-Chester enfermedad comienza con una b\u00fasqueda frustrante y aterradora de respuestas.<\/p>\n

Esto es lo que les ocurri\u00f3 a la fundadora de la Alianza Global ECD, Kathy Brewer, y a su difunto marido, Gary. En el momento de su muerte, Gary llevaba 20 a\u00f1os enfermo y tres muy enfermo. Ten\u00eda s\u00edntomas de enfermedad renal y, de hecho, se someti\u00f3 a un trasplante de ri\u00f1\u00f3n. Pero no fue hasta su autopsia cuando Kathy supo Erdheim-Chester cu\u00e1l era la verdadera causa. <\/p>\n

\u00c9ste es el reto de una enfermedad muy rara. Cuando una enfermedad afecta s\u00f3lo a unas 1.000 personas en todo el mundo, pocos m\u00e9dicos tienen la familiaridad necesaria para diagnosticarla, sobre todo cuando puede manifestarse con s\u00edntomas que van desde dolor \u00f3seo y p\u00e9rdida de peso hasta problemas de visi\u00f3n y equilibrio. (Entre otros muchos sistemas corporales, ECD puede afectar a las gl\u00e1ndulas pituitaria y suprarrenales, los pulmones, la membrana que rodea el coraz\u00f3n, los ri\u00f1ones y el cerebro). <\/p>\n

Sin embargo, la historia de ECD es notablemente diferente hoy de lo que era en 2008, y la raz\u00f3n es la Alianza Global ECD. Iniciada por cuidadores de pacientes que se encontraron a trav\u00e9s de Internet, la Alianza ha pasado de seis familias a casi 800, y ha cambiado radicalmente las perspectivas de los pacientes de ECD. <\/p>\n

Hoy en d\u00eda, la mayor\u00eda de los pacientes de ECD pueden controlar la progresi\u00f3n de la enfermedad con uno de los diversos tratamientos que se utilizan actualmente. Muchos han pasado de enfrentarse a una esperanza de vida t\u00edpica de 3-5 a\u00f1os a controlar los s\u00edntomas mientras siguen con sus vidas. <\/strong><\/p>\n

[\/et_pb_text][\/et_pb_column][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\/2021\/10\/ECD-Hope-cover.png\u00bb title_text=\u00bbECD Cubierta de esperanza\u00bb url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf\u00bb url_new_window=\u00bbon\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_blurb title=\u00bbNuestra esperanza para el futuro\u00bb url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf\u00bb url_new_window=\u00bbon\u00bb image_icon_width=\u00bb60px\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb link_option_url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/Case-for-Support.pdf\u00bb link_option_url_new_window=\u00bbon\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Lee sobre el Plan Estrat\u00e9gico Quinquenal que est\u00e1 aplicando actualmente tu grupo de defensa.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb][et_pb_column _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb type=\u00bb4_4″][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb hover_enabled=\u00bb0″ sticky_enabled=\u00bb0″ text_orientation=\u00bbcenter\u00bb]<\/p>\n

La Alianza Global ECD ha creado una comunidad basada en la colaboraci\u00f3n y las asociaciones entre pacientes, familiares, amigos, donantes, profesionales m\u00e9dicos e investigadores. Como comunidad, la siguiente cronolog\u00eda ofrece una visi\u00f3n general de algunos de los logros que se han producido como resultado. <\/p>\n

[\/et_pb_text][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/09\/ECD-Timeline-img.jpg\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb title_text=\u00bbCalendario ECD img\u00bb hover_enabled=\u00bb0″ sticky_enabled=\u00bb0″ align=\u00bbcenter\u00bb][\/et_pb_image][\/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=\u00bb#F2F2F2″ global_colors_info=\u00bb{}\u00bb][et_pb_row column_structure=\u00bb1_2,1_2″ make_equal=\u00bbon\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_width_bottom=\u00bb1px\u00bb border_color_bottom=\u00bb#f1f1f1″ global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#FFFFFF\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_blurb use_icon=\u00bbon\u00bb font_icon=\u00bb||fa||900″ icon_color=\u00bb#35A4BB\u00bb image_icon_width=\u00bb60px\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb body_text_align=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

La Alianza estableci\u00f3 una red de Centros de Atenci\u00f3n en instituciones m\u00e9dicas l\u00edderes a nivel internacional, cada uno de ellos con un equipo de especialistas preparados para diagnosticar y tratar ECD.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#35A4BB\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_orientation=\u00bbcenter\u00bb background_layout=\u00bbdark\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

\u00abAntes de ECDGA<\/strong>, no hab\u00eda ning\u00fan lugar central para tratar la enfermedad u obtener informaci\u00f3n, ninguna organizaci\u00f3n. Te encontrabas con un m\u00e9dico que se ofrec\u00eda a tratarte y descubr\u00edas que nunca hab\u00eda tratado a un solo paciente de ECD \u00ab. – cuidador de un paciente de ECD <\/em><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_2,1_2″ make_equal=\u00bbon\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_width_bottom=\u00bb1px\u00bb border_color_bottom=\u00bb#f1f1f1″ global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#35A4BB\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_orientation=\u00bbcenter\u00bb background_layout=\u00bbdark\u00bb global_colors_info=\u00bb{}\u00bb]\u00bbEn la \u00faltima d\u00e9cada se han conseguido muchas cosas<\/strong> desde el punto de vista cient\u00edfico y humano, y muy pocas de ellas no tienen las huellas de la Alianza\u00bb. – ECD investigador<\/em>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#FFFFFF\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_blurb use_icon=\u00bbon\u00bb font_icon=\u00bb||divi||400″ icon_color=\u00bb#35A4BB\u00bb image_icon_width=\u00bb60px\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb body_text_align=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Cre\u00f3 una red de apoyo de familias y reuni\u00f3 a miembros de la comunidad internacional de ECD en una serie de conferencias anuales, una oportunidad para que los pacientes se conocieran y hablaran con m\u00e9dicos especializados en ECD.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_2,1_2″ make_equal=\u00bbon\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_width_bottom=\u00bb1px\u00bb border_color_bottom=\u00bb#f1f1f1″ locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#FFFFFF\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_blurb use_icon=\u00bbon\u00bb font_icon=\u00bb||divi||400″ icon_color=\u00bb#35A4BB\u00bb image_icon_width=\u00bb60px\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb body_text_align=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Puso en marcha un registro de pacientes para crear un archivo de datos sobre ECD y se asoci\u00f3 con los NIH para reclutar pacientes para un estudio de historia natural, clave para comprender la progresi\u00f3n de la enfermedad.<\/p>\n

[\/et_pb_blurb][\/et_pb_column][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#35A4BB\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_orientation=\u00bbcenter\u00bb background_layout=\u00bbdark\u00bb global_colors_info=\u00bb{}\u00bb]\u00bbLa Alianza Global es ejemplar:<\/strong>aboga de verdad, llega a los m\u00e9dicos, saca a la gente de sus silos y la conecta\u00bb. – ECD M\u00e9dico del Centro de Atenci\u00f3n[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_2,1_2″ make_equal=\u00bbon\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb border_width_bottom=\u00bb1px\u00bb border_color_bottom=\u00bb#f1f1f1″ global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#35A4BB\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb text_orientation=\u00bbcenter\u00bb background_layout=\u00bbdark\u00bb global_colors_info=\u00bb{}\u00bb]\u00bbEsta organizaci\u00f3n es como un regalo. Personas que se esfuerzan por mejorar la atenci\u00f3n a las personas con ECD. Nunca he experimentado una devoci\u00f3n tan sincera\u00bb. – ECD paciente<\/em>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00bb1_2″ module_class=\u00bbds-vertical-align\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#FFFFFF\u00bb custom_padding=\u00bb40px|40px|40px|40px|true|true\u00bb border_radii=\u00bbon|20px|20px|20px|20px\u00bb box_shadow_style=\u00bbpreset1″ box_shadow_color=\u00bbrgba(0,0,0,0.1)\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_blurb use_icon=\u00bbon\u00bb font_icon=\u00bb||fa||900″ icon_color=\u00bb#35A4BB\u00bb image_icon_width=\u00bb60px\u00bb _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb body_text_align=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Y, lo que es m\u00e1s sorprendente, ayud\u00f3 a hacer posible el trabajo en terapia g\u00e9nica que condujo a la aprobaci\u00f3n por la FDA de un f\u00e1rmaco eficaz en el tratamiento de ECD.<\/p>\n

[\/et_pb_blurb][\/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 _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_text _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||17px|||\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

M\u00e1s logros<\/h3>\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\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t
Year<\/th>Accomplishment<\/th>Details<\/th>\n<\/tr>\n<\/thead>\n
2025<\/td>10th Annual ECD Conference held in Barcelona, Spain, in partnership with Hospital Universitari de Bellvitge<\/td>Patients, family members, clinicians, and scientists met together to share knowledge and experiences. Attendees from over 20 countries shared information with the help of real-time human interpreters, supporting five different languages. The conference was co-hosted by Dr. Xavier Solanich.<\/td>\n<\/tr>\n
<\/td>Rheumatology Conference ECD Awareness Exhibit Planned<\/td>The ECDGA will attend the American College of Rheumatology (ACR) conference in Chicago, October 24-29, 2025.<\/td>\n<\/tr>\n
<\/td>Monthly Webinars<\/td>Monthly webinars are held to share information to ease the burden of living with ECD.<\/td>\n<\/tr>\n
<\/td>Updated ECDGA Website<\/td>A more modern website was released by the ECDGA that fully supports 11 languages.<\/td>\n<\/tr>\n
2024<\/td>9th Annual Conference held in Seattle, WA, USA, in partnership with the University of Washington and Fred Hutch Cancer Center<\/td>The Seattle conference was attended by 68 patients and family members and 42 medical professionals from around the world. The conference was co-hosted by Dr. Paul Hendrie.<\/td>\n<\/tr>\n
<\/td>Endocrinology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted a booth at the Endocrinology conference, ENDO 2024, in Boston, Massachusetts, June 1-4, 2024.<\/td>\n<\/tr>\n
<\/td>Ophthalmology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the American Academy of Ophthalmology (AAO) in Chicago, Illinois, from October 18-21, 2024.<\/td>\n<\/tr>\n
<\/td>Radiology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the Radiological Society of North America (RSNA) conference in Chicago, Illinois, from December 1-4, 2024.<\/td>\n<\/tr>\n
<\/td>Pathology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the United States and Canadian Academy of Pathology (USCAP) in Baltimore, Maryland, from March 25-27, 2024.<\/td>\n<\/tr>\n
<\/td>Virtual Chats<\/td>The number of virtual chats offered to the community has been expanded to include three general English chats: one for patients, one for caregivers, and one for those grieving a loss due to ECD. In addition, six other location- and\/or language-specific chats are also offered.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant awarded to Francesco Peyronel, MD, at Meyer Children\u2019s University Hospital in Firenze, Italy.<\/td>Dr. Peyronel was awarded the grant to study \u201cA New Comprehensive Approach to Predict Long-Term Prognosis in Erdheim-Chester Disease: From Cluster Analysis to Patient-Reported Outcomes\u201d.<\/td>\n<\/tr>\n
2023<\/td>8th Annual ECD Conference held in Rochester, Minnesota, in partnership with Mayo Clinic<\/td>The ECD conference was attended by 59 patients and family members and 41 medical professionals from around the world. The conference was co-hosted by Dr. Ronald Go and Dr. Gaurav Goyal.<\/td>\n<\/tr>\n
<\/td>Neuro-oncology Conference ECD Awareness Exhibit<\/td>The ECDGA hosted an awareness booth at the Society of Neuro-Oncology (SNO) conference in Vancouver, British Columbia, from November 15 \u2013 19, 2023.<\/td>\n<\/tr>\n
<\/td>$200,000 grant awarded in partnership with the Leukemia and Lymphoma Society (LLS) to Matthew Collin, MD, PhD at Newcastle University in the UK.<\/td>Dr. Collin was awarded the grant to study \u201cInferring the origin of Erdheim-Chester Disease from Phylogenetic\u201d.<\/td>\n<\/tr>\n
<\/td>$200,000 grant awarded in partnership with the Leukemia and Lymphoma Society (LLS) to Gaurav Goyal, MD, at the University of Alabama at Birmingham in Alabama, AL<\/td>Dr. Goyal was awarded the grant to study \u201cA Multi-Center, Multi-National Investigation of Survivorship and Patient-Reported Symptoms in Erdheim-Chester Disease\u201d.<\/td>\n<\/tr>\n
<\/td>$50,000 grant awarded to Egle Kvedaraite, MD at Karolinska Institutet in Stockholm, Sweden.<\/td>Dr. Kvedaraite was awarded the grant to study \u201cSpatial understanding of Erdheim-Chester disease origin and lesional microenvironment for future precision medicine.\u201d<\/td>\n<\/tr>\n
<\/td>$20,000 Grant Awarded to Jithma Abeykoon, MD at the Mayo Clinic in Rochester, MN, USA.<\/td>Dr. Abeykoon was awarded the grant in partnership with Uplifting Athletes to study \u201cPrognostic and Therapeutic Significance of Chromosome Region Maintenance 1 (CRM1) Protein in Erdheim-Chester Disease\u201d.<\/td>\n<\/tr>\n
2022<\/td>Three Regional ECD meetings held <\/td>Meetings were held in Birmingham, AL; Cincinnati, OH, and San Diego, CA, all in the USA, as the COVID pandemic was being brought under control. The meetings were held by patients, family members, and medical professionals.<\/td>\n<\/tr>\n
<\/td>2nd FDA-Approved Drug: Cobimetinib (Cottelic)<\/td>A Memorial Sloan Kettering Trial led to favorable results for the Erdheim-Chester patients enrolled, eventually resulting in approval. The ECDGA assisted in the recruitment process to make this possible.<\/td>\n<\/tr>\n
<\/td>Hematology Conference ECD Awareness Exhibit<\/td>The ECDGA returned to the American Society of Hematology (ASH) meeting to host an awareness booth and interact with hematologists from around the world to help raise awareness with clinicians who would be likely to diagnose ECD early in the progression of the disease, when treatments are more likely to be most effective.<\/td>\n<\/tr>\n
<\/td>$50,000 Grant Awarded to Francesco Pegararo, MD at Meyer Chidren\u2019s University Hospital in Firenze, Italy in Firenze, Italy<\/td>Dr. Pegoraro was awarded the grant to study \u201cExploring the genetic landscape of Erdheim-Chester disease by integrating GWAS and -omic data.\u201d<\/td>\n<\/tr>\n
<\/td>$20,000 Grant Awarded to Gaurav Goyal, MD at the University of Alabama at Birmingham in Alabama, USA<\/td>Dr. Goyal was awarded the grant in partnership with Uplifting Athletes to study \u201cBurden of morbidity and premature mortality in patients with Erdheim-Chester disease.\u201d<\/td>\n<\/tr>\n
2021<\/td>Webinars<\/a>, Chats, and Strategy continue<\/td>The organization continues to support patients, families, and physicians with meaningful connections as much as possible during the COVID pandemic. All while implementing our 5-Year Strategy of growth and improvement.<\/td>\n<\/tr>\n
<\/td>NCCN Guidelines<\/td>The National Comprehensive Cancer Network (NCCN) Guidelines\u00ae for Histiocytosis were published, as discussed and planned through the ECD Care Center Referral Network meetings managed through the ECDGA leadership.<\/td>\n<\/tr>\n
<\/td>Virtual Medical Symposium<\/td>With a pandemic that no one expected or hoped for, the annual events<\/a> were canceled for 2020. This year, we pulled together our top physicians and researchers to create an online conference, continuing the collaboration and growth in the medical field without delay.<\/td>\n<\/tr>\n
2020<\/td>Community Webinars<\/a><\/td>The COVID pandemic led to the ECDGA providing Educational webinars<\/a> hosted by our expert medical member. These replaced the in-person conference normally held annually for the ECD community. This involved partnerships with other histiocytosis advocacy groups. These partnerships have strengthened and streamlined this project, benefiting all involved.<\/td>\n<\/tr>\n
<\/td>High-Level Strategy Planning<\/td>The ECD Global Alliance is a small but extremely effective organization leading the fight against the disease. Beginning in 2008, the organization has helped achieve major advances in treatment and offered invaluable support to patients and caregivers. As a result, the Alliance has helped change the meaning of an ECD diagnosis<\/a>. Organization leaders met to set a direction to continue the track record of community accomplishments.<\/td>\n<\/tr>\n
2019<\/td>7th Annual ECD Conference held in Milan, Italy, in partnership with San Raffaele Scientific Institute<\/td>The purpose of the medical symposium is to unite international medical professionals in discussion and education of studies, experiences, and knowledge regarding Erdheim-Chester Disease. In this space, medical professionals are encouraged to present findings and knowledge to audience members. During the patient meeting, patients and family members are encouraged to ask questions, reach out, and learn about the ultra-rare disease that affects their lives. This meeting was co-hosted with Prof. Lorenzo Dagna.<\/td>\n<\/tr>\n
<\/td>Endocrinology Conference ECD Awareness Exhibit<\/td>The purpose of the ECD Global Alliance exhibit at the endocrinology conference, ENDO 2019, was to generate awareness of Erdheim-Chester Disease, communicate the recent research landscape and new treatment opportunities for patients, and facilitate the growth of the ECD Global Alliance medical professional network among interested physicians and scientists. In addition, connect with other exhibitors offering services that can help the ECDGA raise further awareness and education of ECD.<\/td>\n<\/tr>\n
<\/td>Second Consensus Article Published<\/td>As a result of the ECD Medical Symposia in previous years, the second-ever comprehensive guidelines were published by leading ECD experts. This important document was a collaborative collection of data gleaned from extensive research on the disease and the treatment of patients worldwide.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant awarded to Dr. Nicole Coufal at UCSD<\/td>Dr. Coufal was awarded a grant to study \u201cPathophysiology of Neurodegenerative Erdheim-Chester Disease and Langerhans Cell Histiocytosis.\u201d<\/td>\n<\/tr>\n
<\/td>Chat Program<\/td>The infamous COVID pandemic pushed the ECDGA to find creative ways to engage the community. With online meetings becoming normal, the Alliance began hosting chats for various audiences. This includes patients, friends, family, caregivers, physicians, and regional and international language meetings.<\/td>\n<\/tr>\n
2018<\/td>6th Annual ECD Conference held in Orlando, FL in partnership with Orlando Health<\/td>A total of 109 members from eight countries attended to learn about the drug trial process, how to<\/a> manage multiple medications, how to<\/a> care for yourself with nutrition and exercise, and about care management. This conference was co-hosted by Dr. Julio Hajdenberg.<\/td>\n<\/tr>\n
<\/td>Hematology Conference ECD Awareness Exhibit<\/td>Hematologists from around the world eagerly engage with ECDGA exhibitors at the American Society of Hematologists (ASH) to learn more about Erdheim-Chester Disease.<\/td>\n<\/tr>\n
<\/td>Grand Round Medical Presentations<\/td>ECD-knowledgeable physicians provided education on ECD at the University of Miami and Houston Methodist.<\/td>\n<\/tr>\n
2017<\/td>1st FDA-Approved Drug: Vemurafenib (Zelboraf)<\/td>The Memorial Sloan Kettering Basket Trial led to favorable results for the Erdheim-Chester patients enrolled, eventually resulting in approval. The ECDGA assisted in the recruitment process to make this possible.<\/td>\n<\/tr>\n
<\/td>5th Annual ECD Conference held in New York in partnership with Columbia University and Memorial Sloan Kettering Cancer Center<\/td>Patients, family members, nurses, research teams, and numerous physicians attended the 2017 Patient & Family Gathering and Medical Symposium held in New York. Attendees were brought up to date on the latest research, treatments<\/a>, and care management techniques, including the psychological effects of living with ECD. This meeting was co-hosted with Dr. Mark Heaney and Dr. Eli L. Diamond.<\/td>\n<\/tr>\n
<\/td>Care Centers<\/a> Added to Network<\/td>Locations in Israel, China, Nashville, Canada, and Australia were welcomed to the network.<\/td>\n<\/tr>\n
<\/td>Grand Round Medical Presentations<\/td>ECD-knowledgeable physicians were sponsored by the ECDGA to give educational talks at universities in Houston, TX, New Orleans, and Shreveport, LA.<\/td>\n<\/tr>\n
<\/td>Pathology Conference ECD Awareness Exhibit<\/td>The ECDGA medical community volunteered to create materials to educate attendees at an annual pathology conference. The ECDGA team hosted an exhibit booth, where they introduced and discussed ECD at length with pathologists around the world.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research Grant Awarded to Dr. Benjamin Durham at MSK<\/td>Dr. Durham was awarded a grant to study \u201cDefining the Cell-of-Origin of Erdheim-Chester Disease.\u201d<\/td>\n<\/tr>\n
2016<\/td>4th Annual ECD Conference held in Paris, France, in partnership with H\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re<\/td>The first European conference, held in Paris, France, included 63 attendees from 17 different countries who heard from 16 physicians about ECD<\/a> organ involvement, the use of scans to monitor the disease and its treatments<\/a>, techniques to manage pain, and the latest research findings, including treatment options. The first European ECD Medical Symposium was held in Paris, France, at Ho\u0302pital Piti\u00e9-Salp\u00eatri\u00e8re, where over 50 physicians gathered to collaborate and share data on ECD. This meeting was co-hosted with Prof. Julien Haroche.<\/td>\n<\/tr>\n
<\/td>$43,000 ECD research grant was awarded to Dr. Eli Diamond at Memorial Sloan Kettering<\/td>Dr. Eli L. Diamond was awarded a grant to study \u201cA Clinical, Structural, and Functional Neuroimaging Study of Cognition in Erdheim-Chester Disease.\u201d<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant was awarded to Dr. Filip Janku at MD Anderson and Dr. Omar Abdel-Wahab at Memorial Sloan Kettering<\/td>Drs. Janku and Abdel-Wahab were awarded a grant to study \u201cUnderstanding and Targeting Novel Molecular Alterations in Erdheim-Chester disease Without the BRAFV600E Mutation.\u201d<\/td>\n<\/tr>\n
<\/td>$50,000 ECD research grant was awarded to Dr. Marina Ferrarini and Dr. Lorenzo Dagna at San Raffaele Scientific Institute<\/td>Drs. Ferrarini and Dagna were awarded a grant to study \u201cTailoring Treatments for Erdheim-Chester Disease.\u201d<\/td>\n<\/tr>\n
<\/td>10 Languages Added to Website<\/td>Volunteers from around the globe dedicated their time and talents to translating important content into ten languages for the ECDGA website.<\/td>\n<\/tr>\n
2015<\/td>3rd Annual ECD Conference held in Houston, Texas, in partnership with MD Anderson Cancer Center<\/td>Patients, families, and physicians united in Houston, TX, for a memorable two-day gathering. The medical symposium was co-hosted at MD Anderson Cancer Center, with Dr. Filip Janku.<\/td>\n<\/tr>\n
<\/td>Development of ECD Referral Care Center Network<\/td>Care centers<\/a> with ECD-knowledgeable medical teams began to form a network to support patients with care and consultation around the world. To date, the ECDGA collaborates with 35 ECD Care Centers <\/a>serving patients.<\/td>\n<\/tr>\n
<\/td>New Website<\/td>An updated website was developed to engage members on all devices.<\/td>\n<\/tr>\n
<\/td>$313,000 Grant was awarded to Dr. Eli L. Diamond at Memorial Sloan Kettering and Pr. Matthew Collin at Newcastle University<\/td>Drs. Eli L. Diamond and Matthew Collin were awarded for the development of the ECD Patient Registry. This allowed patients and physicians the opportunity to collaborate and lead research more effectively so that treatment and care can continue to improve and evolve.<\/td>\n<\/tr>\n
2014<\/td>2nd ECD Conference held in Bethesda, Maryland, in partnership with the National Institutes of Health<\/td>Patients and family members gather in Bethesda, MD, for a two-day meeting including ECD presentations delivered by the experts. Physicians and researchers presented their work and discussed the state of Erdheim-Chester disease care for patients around the world. This conference was co-hosted by Dr. Juvi Estrada-Veras.<\/td>\n<\/tr>\n
<\/td>Consensus guidelines for ECD treatment are published<\/td>The \u201cConsensus guidelines for the diagnosis and clinical management of Erdheim-Chester Disease\u201d are published in the journal, Blood.<\/td>\n<\/tr>\n
2013<\/td>1st ECD International Conference held in San Diego, California<\/td>In addition to the patient meeting, the first international meeting was held this year, inviting doctors to present ECD research, case studies, and treatments<\/a>. This meeting was also the catalyst for collaboration in developing the significant 2014 Blood Journal ECD Consensus document. Collaborative annual conferences have continued to take place around the world each year.<\/td>\n<\/tr>\n
<\/td>ECD Documentary Film<\/td>A patient documentary film was developed and produced to support outreach and education of Erdheim-Chester disease.<\/td>\n<\/tr>\n
<\/td>$50,000 ECD Research Grant Awarded to Drs. Omar Abdel-Wahab, David Hyman, and Eli Diamond at Memorial Sloan Kettering Cancer Center<\/td>$50,000 was awarded to Drs. Abdel-Wahab, Diamond, and Hyman at Memorial Sloan-Kettering Cancer Center (MSK). \u201cSomatic Genetic Alterations in the Pathogenesis and Therapy of Histiocytic Disorders\u201d<\/td>\n<\/tr>\n
2012<\/td>$47,000 ECD Research Grant Awarded to Dr. Julien Haroche and Dr. Laurent Arnaud at H\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re<\/td>Drs. Haroche and Arnaud were awarded a grant to study \u201cUnderstanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis<\/a>\u201d<\/td>\n<\/tr>\n
<\/td>1st ECD Medical Meeting<\/td>A meeting was held in Houston, TX, attended by investigators from various institutions in the US.<\/td>\n<\/tr>\n
2011<\/td>$50,000 ECD Research Grant Awarded to Dr. Lorenzo Dagna at San Raffaele Scientific Institute<\/td>Dr. Dagna was awarded a grant to study \u201cHypoxia and inflammation in Erdheim-Chester disease microenvironment: Insights on the pathogenesis and implications for therapy\u201d. <\/td>\n<\/tr>\n
<\/td>ECD Natural History Study<\/td>The National Institute of Health (NIH) played a pivotal role in ECD research and in pursuing new treatments that educate the medical community about ECD<\/a>. NIH clinical director, William Gahl, M.D., Ph.D., and principal investigator, Juvianee Estrada-Veras, M.D., along with Kevin O\u2019Brien, conducted a natural history study on the disease. The study began in 2011, and this led to a treatment trial in 2014. Multiple medical journals have been published with the data collected from this thorough study of ~60 patients.<\/td>\n<\/tr>\n
2010<\/td>501(c)3 Tax Exemption Granted<\/td>ECDGA was granted federal tax exemption status following the formation of the Board of Directors and Medical Advisory Board<\/a>.<\/td>\n<\/tr>\n
<\/td>First multi-center study <\/td>The ECDGA is <\/td>\n<\/tr>\n
2009<\/td>Treatment protocols begin to be published<\/td>The ECDGA is able to share studies and treatment protocols to community members based as documented in peer-reviewed publications<\/td>\n<\/tr>\n
<\/td>ECDGA forms leadership boards<\/td>The ECDGA Board of Directors and Medical Advisory Board are formed.<\/td>\n<\/tr>\n
2008<\/td>ECD Caregivers Meet<\/td>In April 2008, a few ECD caregivers, Carol, Kathy, and RuthAnn found each other via the internet.<\/td>\n<\/tr>\n
<\/td>First Chat Session Held<\/td>With a spirit of \u201cIf you build it, they will come,\u201d an online chat session was scheduled for all those affected by ECD. We started with a group representing only six patients.<\/td>\n<\/tr>\n
<\/td>ECD Website Published<\/td>A website was created with the hope that it would provide much-needed information to families in search of answers for this rare illness.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n

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

[et_pb_dmb_breadcrumbs _builder_version=\u00bb4.27.4″ _module_preset=\u00bbdefault\u00bb body_text_color=\u00bb#FFFFFF\u00bb body_font_size=\u00bb12px\u00bb link_text_color=\u00bb#35A4BB\u00bb custom_margin=\u00bb||5px||false|false\u00bb custom_padding=\u00bb||0px||false|false\u00bb body_font_size_tablet=\u00bb12px\u00bb body_font_size_phone=\u00bb10px\u00bb body_font_size_last_edited=\u00bbon|desktop\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_dmb_breadcrumbs]Nuestra misi\u00f3n La Alianza Global ECD se dedica a la concienciaci\u00f3n, el apoyo, la educaci\u00f3n y la investigaci\u00f3n relacionados […]<\/p>\n","protected":false},"author":14,"featured_media":49068,"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-49059","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/49059","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=49059"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/pages\/49059\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/49068"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=49059"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}