{"id":102356,"date":"2019-01-11T19:47:40","date_gmt":"2019-01-12T01:47:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/7a-reunion-internacional-de-pacientes-y-familiares-de-ecd-milan-italia\/"},"modified":"2026-07-03T08:54:37","modified_gmt":"2026-07-03T13:54:37","slug":"7a-reunion-internacional-de-pacientes-y-familiares-de-ecd-milan-italia","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/7a-reunion-internacional-de-pacientes-y-familiares-de-ecd-milan-italia\/","title":{"rendered":"7\u00aa Reuni\u00f3n Anual de Pacientes y Familiares de ECD Mil\u00e1n, Italia"},"content":{"rendered":"

[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″ _dynamic_attributes=\u00bbtitle\u00bb _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||0px||false|false\u00bb custom_padding=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][\/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\/2026\/06\/7th-Annual-ECD-Patient-Family-Gathering.jpg\u00bb title_text=\u00bb7\u00aa Reuni\u00f3n Anual de Pacientes y Familiares de ECD\u00bb align=\u00bbcenter\u00bb force_fullwidth=\u00bbon\u00bb module_class=\u00bbevent-image\u00bb _builder_version=\u00bb4.27.7″ _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

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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

Resumen del Encuentro de Pacientes y Familias<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

El Encuentro de Pacientes y Familias (PFG) de 2019 reuni\u00f3 a 49 pacientes y familiares de 10 pa\u00edses. A la comunidad de pacientes y familias se unieron 38 m\u00e9dicos y cient\u00edficos apasionados por el cuidado de los pacientes y por aprender m\u00e1s sobre la enfermedad de Erdheim-Chester. Diez m\u00e9dicos y cient\u00edficos ofrecieron charlas sobre la ECD y las necesidades de apoyo de la enfermedad. Se disfrut\u00f3 de una cena de celebraci\u00f3n con todos los asistentes, lo que permiti\u00f3 un tiempo de convivencia y el reconocimiento a los l\u00edderes de la comunidad que dedican su tiempo y recursos a ayudar a la comunidad de la ECD. Consulte la informaci\u00f3n a continuaci\u00f3n para obtener m\u00e1s detalles sobre las actividades y presentaciones del PFG, as\u00ed como fotos de la conferencia. <\/p>\n

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Programas con Agenda del Encuentro<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_4,1_4,1_4,1_4″ 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=\u00bb||0px||false|false\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_4″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture12.png\u00bb title_text=\u00bbPicture1(2)\u00bb url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2019-Milan-PFG-Program.pdf\u00bb url_new_window=\u00bbon\u00bb force_fullwidth=\u00bbon\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00bb1_4″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture13.png\u00bb title_text=\u00bbImagen1(3)\u00bb url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2019-Milan-PFG-Program-1.pdf\u00bb url_new_window=\u00bbon\u00bb force_fullwidth=\u00bbon\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00bb1_4″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture14.png\u00bb title_text=\u00bbImagen1(4)\u00bb url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/German-program-final.pdf\u00bb url_new_window=\u00bbon\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00bb1_4″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Picture15.png\u00bb title_text=\u00bbImagen1(5)\u00bb url=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Italian-Program-Final.pdf\u00bb url_new_window=\u00bbon\u00bb force_fullwidth=\u00bbon\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/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

Presentaci\u00f3n<\/h2>\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\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
Presenter<\/th>Presentation Slides<\/th>English Video<\/th>\n<\/tr>\n<\/thead>\n
Lorenzo Dagna, MD, PhD<\/td>Welcome & Overview of ECD<\/a><\/td>Welcome and Overview - Dearbhaile Dhubhlaoich & Lorenzo Dagna<\/a><\/td>\n<\/tr>\n
Lorenzo Dagna, MD, PhD<\/td>Drug Management<\/a><\/td>Overview of ECD and Drug Management - Lorenzo Dagna<\/a><\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>The Drug Trial Process<\/a><\/td>The Drug Trial Process - Filip Janku<\/a><\/td>\n<\/tr>\n
Julien Haroche , MD, PhD<\/td>Organ Involvement in ECD<\/td>Organ Involvement in ECD - Julien Haroche<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD and the Brain<\/a><\/td>ECD and the Brain <\/a>- Eli Diamond<\/td>\n<\/tr>\n
Ronald Go, MD (moderator)<\/td>Question & Answer with the Experts<\/td>Expert Question & Answer Panel<\/a><\/td>\n<\/tr>\n
Stephane Barete, MD, PhD<\/td>Skin Involvement<\/a><\/td>Skin Involvement with ECD - St\u00e9phane Barete<\/a><\/td>\n<\/tr>\n
Mark Heaney, MD, PhD<\/td>Mutations in ECD<\/a><\/td>Mutations in ECD - Mark Heaney<\/a><\/td>\n<\/tr>\n
Carine Courtillot, MD<\/td>Endocrinology & Hormones<\/a><\/td>Endocrine Manifestations - Carine Courtillot<\/a><\/td>\n<\/tr>\n
Augusto Vaglio, MD, PhD<\/td>Renal & Ureteral Involvement<\/a><\/td>Renal & Ureteral Involvement in ECD - Augusto Vaglio<\/a><\/td>\n<\/tr>\n
Roei Mazor<\/td>Daily Care<\/td>Daily Care - Roei Mazor<\/a><\/td>\n<\/tr>\n
Eli Diamond, MD<\/td>ECD Registry Update<\/a><\/td>ECD Patient Registry Update - Eli Diamond<\/a><\/td>\n<\/tr>\n
ECDGA<\/td>ECDGA Close<\/td>Close - The ECD Global Alliance Team<\/a><\/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>\n

Experiencias de los asistentes<\/h2>\n

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\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

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\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

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Fotograf\u00edas<\/h2>\n

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Simposio m\u00e9dico<\/h3>\n

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Fotos de la recepci\u00f3n\/cena<\/h3>\n

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Foto de grupo de la Reuni\u00f3n Internacional de Pacientes y Familias de ECD en Mil\u00e1n 2019 Resumen del Encuentro de Pacientes y FamiliasEl Encuentro de Pacientes y Familias (PFG) de […]<\/p>\n","protected":false},"author":20,"featured_media":172885,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"\"<\/a>Location:<\/strong> Milan, Italy\r\n\r\n2019 Patient & Family Gathering Schedule of Events<\/strong>\r\n\r\nAll patients and loved ones interested in learning more about ECD and meeting other families are encouraged to attend the following events. The registration fee for the 2-day event includes access to all conference sessions, reception dining, as well as lunch and light refreshments during conference break times. The following meeting times are subject to change.\r\n\r\nAll events will be held at<\/strong>\r\nIRCCS San Raffaele Scientific Institute<\/strong>\r\nVita-Salute San Raffaele University\r\nVia Olgettina, 60\r\nI-20132 Milano \u2013 Italy\r\n\r\n[table id=31 \/]\r\n\r\nHotel & Lodging<\/strong>\r\n\r\nHotel Rafael is the recommended location for your event lodging. This hotel is conveniently located across the courtyard to the hospital\u2019s meeting spaces. There is no room block contracted by the ECDGA for this hotel; therefore, we recommend booking your room as soon as possible to ensure room availability. Follow the hotel\u2019s website for more information and to make a reservation. http:\/\/www.rafaelhotel.it\/en<\/a>\r\n\r\nAdditional Visit Information<\/strong>\r\n\r\nCurrency Conversion Calculator<\/a>\r\nMedia tag: #ECDGA19\r\n\r\nAttendee Experiences<\/strong>\r\n\r\n[showmodule id=\"46785\"]","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","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":38,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102356\/revisions"}],"predecessor-version":[{"id":171176,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102356\/revisions\/171176"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/172885"}],"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}]}}