{"id":33997,"date":"2024-10-16T13:53:45","date_gmt":"2024-10-16T11:53:45","guid":{"rendered":"https:\/\/neuronup.com\/?p=33997"},"modified":"2024-10-16T13:53:45","modified_gmt":"2024-10-16T11:53:45","slug":"les-maladies-rares-en-donnees","status":"publish","type":"post","link":"https:\/\/neuronup.com\/fr\/maladies-rares\/les-maladies-rares-en-donnees\/","title":{"rendered":"Les maladies rares en donn\u00e9es : caract\u00e9ristiques et diagnostic"},"content":{"rendered":"\n<p class=\"has-xl-font-size wp-block-paragraph\">Dans cet article, nous expliquons <strong>ce qu&rsquo;est une maladie rare<\/strong>, en mettant en avant<strong> sa d\u00e9finition, son impact mondial et les difficult\u00e9s<\/strong> auxquelles sont confront\u00e9s les patients. Nous d\u00e9taillons des statistiques sur sa pr\u00e9valence dans diff\u00e9rentes r\u00e9gions du monde et pr\u00e9sentons les principales caract\u00e9ristiques de ces maladies, telles que le diagnostic tardif, la douleur chronique et le handicap.<\/p>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full\"><img decoding=\"async\" width=\"704\" height=\"1477\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/infografia-enfermedades-raras.webp\" alt=\"Infographie avec des ic\u00f4nes m\u00e9dicales illustrant la d\u00e9finition, les statistiques et le diagnostic des maladies rares.\" class=\"wp-image-34000\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/infografia-enfermedades-raras-143x300.webp 143w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/infografia-enfermedades-raras-488x1024.webp 488w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/infografia-enfermedades-raras.webp 704w\" sizes=\"(max-width: 704px) 100vw, 704px\" \/><\/figure>\n<\/div>\n\n\n<h2 class=\"wp-block-heading\">Qu&rsquo;est-ce qu&rsquo;une maladie rare ?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Une maladie est consid\u00e9r\u00e9e comme rare lorsqu&rsquo;elle affecte un nombre limit\u00e9 de la population totale, d\u00e9fini en Europe comme <strong>moins d&rsquo;une personne sur 2 000 citoyens.&nbsp;<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Entre 6 et 8 % de la population mondiale<\/strong><\/li>\n\n\n\n<li>3 millions d&rsquo;Espagnols<\/li>\n\n\n\n<li>30 millones de europeos<\/li>\n\n\n\n<li>25 millones de norteamericanos<\/li>\n\n\n\n<li>42 millones de iberoamericanos<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">On estime qu&rsquo;<strong>il existe aujourd&rsquo;hui entre 5 000 et 7 000 maladies rares.<\/strong><\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Caract\u00e9ristiques des maladies rares<\/h2>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>D\u00e9but pr\u00e9coce dans la vie<\/strong> : 2 cas sur 3 apparaissent avant l&rsquo;\u00e2ge de deux ans.<\/li>\n\n\n\n<li><strong>Douleurs chroniques<\/strong> : 1 malade sur 5<\/li>\n\n\n\n<li><strong>Perte d&rsquo;autonomie<\/strong> : 1 cas sur 3<\/li>\n\n\n\n<li><strong>Pronostic vital engag\u00e9<\/strong> : aux maladies rares on peut attribuer un nombre \u00e9lev\u00e9 de d\u00e9c\u00e8s pr\u00e9coces.<\/li>\n<\/ul>\n\n\n\n<div style=\"height:25px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"wp-block-image image-interface\">\n<figure class=\"aligncenter size-full\"><img decoding=\"async\" width=\"2000\" height=\"512\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Infografia-enfermedades-raras-02.webp\" alt=\"Infographie avec trois graphiques circulaires en bleu montrant la mortalit\u00e9 par \u00e2ge : 35 % avant un an, 10 % entre 1 et 5 ans et 12 % entre 5 et 15 ans.\" class=\"wp-image-34001\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Infografia-enfermedades-raras-02-300x77.webp 300w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Infografia-enfermedades-raras-02-768x197.webp 768w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Infografia-enfermedades-raras-02-1024x262.webp 1024w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Infografia-enfermedades-raras-02-1536x393.webp 1536w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Infografia-enfermedades-raras-02.webp 2000w\" sizes=\"(max-width: 2000px) 100vw, 2000px\" \/><figcaption class=\"wp-element-caption\">Pourcentages des maladies rares<\/figcaption><\/figure>\n<\/div>\n\n\n<h2 class=\"wp-block-heading\">Diagnostic des maladies rares<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Entre l&rsquo;apparition des premiers sympt\u00f4mes et l&rsquo;obtention d&rsquo;un diagnostic d&rsquo;une maladie rare, il s&rsquo;\u00e9coule en moyenne <strong>5 ans<\/strong>. Pendant ce d\u00e9lai de diagnostic :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>46,5 % ne re\u00e7oit aucun soutien ni traitement<\/li>\n\n\n\n<li>26,7 % re\u00e7oit un traitement inadapt\u00e9<\/li>\n\n\n\n<li>26,8 % : leur maladie s&rsquo;est aggrav\u00e9e<\/li>\n<\/ul>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-group\"><div class=\"wp-block-group__inner-container is-layout-constrained wp-block-group-is-layout-constrained\">\n<div class=\"wp-block-columns br-0111 particle-bg p-5 has-primary-background-color has-background is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<h2 class=\"wp-block-heading has-white-color has-text-color\">Essayez NeuronUP 7 jours gratuitement<\/h2>\n\n\n\n<p class=\"has-white-color has-text-color wp-block-paragraph\">Vous pourrez travailler avec nos activit\u00e9s, concevoir des s\u00e9ances ou effectuer des r\u00e9habilitations \u00e0 distance<\/p>\n<\/div>\n\n\n\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<div class=\"wp-block-buttons is-content-justification-center is-layout-flex wp-container-core-buttons-is-layout-fe48e5de wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\" style=\"--button-background:var(--color-custom-1);--button-background-hover:#cc7e00;\"><a class=\"wp-block-button__link button   wp-element-button\" href=\"https:\/\/neuronup.com\/fr\/landing\/\">Commencez votre essai<\/a><\/div>\n\n<\/div>\n<\/div>\n<\/div>\n<\/div><\/div>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h2 class=\"wp-block-heading\">Prise en charge sanitaire des maladies rares<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">46,6 % ne se d\u00e9clarent pas satisfaits des soins de sant\u00e9 re\u00e7us.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">D\u00e9placements \u00e0 la recherche d&rsquo;un diagnostic ou d&rsquo;un traitement<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">50 % des patients ont d\u00fb se d\u00e9placer ces derni\u00e8res ann\u00e9es en dehors de leur province en raison de la maladie.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">D\u00e9penses<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Chaque famille consacre en moyenne 350\u202f\u20ac aux d\u00e9penses.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Discrimination<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">75 % ont ressenti de la discrimination au moins une fois en raison de la maladie.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Handicap<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">70 % des personnes atteintes d&rsquo;une maladie rare poss\u00e8dent le certificat de handicap.<\/p>\n\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n<div class=\"wp-block-image\">\n<figure class=\"aligncenter size-full is-resized\"><img decoding=\"async\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2025\/07\/Infografia-Enfermedades-raras-ES.webp\" alt=\"En-t\u00eate &#039;Maladies rares&#039; avec une liste de cinq syndromes visibles et deux personnes dans un environnement m\u00e9dical.\" class=\"wp-image-43560\" style=\"width:600px\"\/><\/figure>\n<\/div>\n\n\n<div style=\"height:50px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<h3 class=\"wp-block-heading\">Si vous avez aim\u00e9 cet article sur les maladies rares, vous pourriez \u00e9galement \u00eatre int\u00e9ress\u00e9 par d&rsquo;autres articles similaires :<\/h3>\n\n<div class=\"mai-grid entries entries-grid has-boxed has-image-full\" style=\"--entry-title-font-size:var(--font-size-lg);--align-text:start;--entry-meta-text-align:start;\"><div class=\"entries-wrap has-columns\" 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href=\"https:\/\/neuronup.com\/fr\/actualites-de-la-stimulation-cognitive\/troubles-neuro-developpementaux\/tdah\/bref-historique-du-tdah-et-de-son-impact-sur-le-fonctionnement-executif\/\" rel=\"bookmark\">Br\u00e8ve histoire du TDAH et son impact sur le fonctionnement ex\u00e9cutif<\/a><\/h3>\n<\/div><\/article><article class=\"entry entry-grid is-column has-entry-link has-image has-image-first type-post category-lesions-cerebrales tag-cerveau tag-dano-cerebral tag-dano-cerebral-adquirido tag-maladie-d-alzheimer\" style=\"--entry-index:2;\" aria-label=\"Anosognosie : qu&rsquo;est-ce que c&rsquo;est, histoire et r\u00e9alit\u00e9 neuropsychologique\" itemscope itemtype=\"https:\/\/schema.org\/CreativeWork\"><a class=\"entry-image-link\" href=\"https:\/\/neuronup.com\/fr\/actualites-de-la-stimulation-cognitive\/lesions-cerebrales\/anosognosie-quest-ce-que-cest-histoire-et-realite-neuropsychologique\/\" tabindex=\"-1\" aria-hidden=\"true\"><img decoding=\"async\" width=\"400\" height=\"246\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2022\/12\/Anosognosia-que-es-historia-y-realidad-neuropsicologica.webp\" class=\"entry-image size-landscape-sm\" alt=\"Mot ANOSOGNOSIE en typographie moderne sur fond bleu clair, design abstrait qui sugg\u00e8re la confusion.\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2022\/12\/Anosognosia-que-es-historia-y-realidad-neuropsicologica-300x185.webp 300w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2022\/12\/Anosognosia-que-es-historia-y-realidad-neuropsicologica-768x473.webp 768w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2022\/12\/Anosognosia-que-es-historia-y-realidad-neuropsicologica-1024x630.webp 1024w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2022\/12\/Anosognosia-que-es-historia-y-realidad-neuropsicologica.webp 1201w\" sizes=\"(max-width:599px) 599px, (min-width:600px) and (max-width: 799px) 799px, (min-width:800px) and (max-width: 999px) 333px, (min-width:1000px) 400px\" \/><\/a><div class=\"entry-wrap entry-wrap-grid\"><h3 class=\"entry-title\" itemprop=\"headline\"><a class=\"entry-title-link\" href=\"https:\/\/neuronup.com\/fr\/actualites-de-la-stimulation-cognitive\/lesions-cerebrales\/anosognosie-quest-ce-que-cest-histoire-et-realite-neuropsychologique\/\" rel=\"bookmark\">Anosognosie : qu&rsquo;est-ce que c&rsquo;est, histoire et r\u00e9alit\u00e9 neuropsychologique<\/a><\/h3>\n<\/div><\/article><article class=\"entry entry-grid is-column has-entry-link has-image has-image-first type-post category-troubles-neuro-developpementaux tag-autisme tag-ninos tag-semana-del-cerebro tag-tdah tag-trastornos-del-neurodesarrollo\" style=\"--entry-index:3;\" aria-label=\"L&rsquo;importance de l&rsquo;intervention pr\u00e9coce dans les troubles du neurod\u00e9veloppement : outils et approches efficaces\" itemscope itemtype=\"https:\/\/schema.org\/CreativeWork\"><a class=\"entry-image-link\" 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src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/02\/famosos-hablan-de-salud-mental-scaled-1.webp\" class=\"entry-image size-landscape-sm\" alt=\"Silhouette d&#039;une personne de dos devant une grande fen\u00eatre \u00e9clair\u00e9e; pi\u00e8ce sombre et lumi\u00e8re douce inspirant la contemplation.\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/02\/famosos-hablan-de-salud-mental-scaled-1-300x200.webp 300w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/02\/famosos-hablan-de-salud-mental-scaled-1-768x512.webp 768w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/02\/famosos-hablan-de-salud-mental-scaled-1-1024x683.webp 1024w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/02\/famosos-hablan-de-salud-mental-scaled-1-1536x1024.webp 1536w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/02\/famosos-hablan-de-salud-mental-scaled-1-2048x1366.webp 2048w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/02\/famosos-hablan-de-salud-mental-scaled-1.webp 2560w\" sizes=\"(max-width:599px) 599px, (min-width:600px) and (max-width: 799px) 799px, (min-width:800px) and (max-width: 999px) 333px, (min-width:1000px) 400px\" \/><\/a><div class=\"entry-wrap entry-wrap-grid\"><h3 class=\"entry-title\" itemprop=\"headline\"><a class=\"entry-title-link\" href=\"https:\/\/neuronup.com\/fr\/psychologie\/les-celebrites-contribuent-a-normaliser-les-problemes-de-sante-mentale\/\" rel=\"bookmark\">Les c\u00e9l\u00e9brit\u00e9s contribuent \u00e0 normaliser les probl\u00e8mes de sant\u00e9 mentale<\/a><\/h3>\n<\/div><\/article><article class=\"entry entry-grid is-column has-entry-link has-image has-image-first type-post category-nouveautes-neuronup tag-noticias-de-neuronup\" style=\"--entry-index:5;\" aria-label=\"Qu&rsquo;est-ce qui va se passer prochainement sur NeuronUP ?\" itemscope itemtype=\"https:\/\/schema.org\/CreativeWork\"><a class=\"entry-image-link\" href=\"https:\/\/neuronup.com\/fr\/nouveautes-neuronup\/que-se-passera-prochainement-sur-neuronup\/\" tabindex=\"-1\" aria-hidden=\"true\"><img decoding=\"async\" width=\"400\" height=\"224\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Chapas-nuevo-diseno-NeuronUP.webp\" class=\"entry-image size-landscape-sm\" alt=\"Interface de l&#039;activit\u00e9 Capsules dans NeuronUP avec design mis \u00e0 jour : jeu interactif, bouton D\u00e9marrer et indice avec &#039;?&#039; pour ordonner les Capsules.\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Chapas-nuevo-diseno-NeuronUP-300x168.webp 300w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Chapas-nuevo-diseno-NeuronUP-768x429.webp 768w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Chapas-nuevo-diseno-NeuronUP-1024x573.webp 1024w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Chapas-nuevo-diseno-NeuronUP.webp 1207w\" sizes=\"(max-width:599px) 599px, (min-width:600px) and (max-width: 799px) 799px, (min-width:800px) and (max-width: 999px) 333px, (min-width:1000px) 400px\" \/><\/a><div class=\"entry-wrap entry-wrap-grid\"><h3 class=\"entry-title\" itemprop=\"headline\"><a class=\"entry-title-link\" href=\"https:\/\/neuronup.com\/fr\/nouveautes-neuronup\/que-se-passera-prochainement-sur-neuronup\/\" rel=\"bookmark\">Qu&rsquo;est-ce qui va se passer prochainement sur NeuronUP ?<\/a><\/h3>\n<\/div><\/article><article class=\"entry entry-grid is-column has-entry-link has-image has-image-first type-post category-assessment tag-evaluacion-neuropsicologica\" style=\"--entry-index:6;\" aria-label=\"Nouveaux tests d&rsquo;\u00e9valuation d\u00e9j\u00e0 disponibles sur NeuronUP\" itemscope itemtype=\"https:\/\/schema.org\/CreativeWork\"><a class=\"entry-image-link\" href=\"https:\/\/neuronup.com\/fr\/assessment\/nouveaux-tests-d-evaluation\/\" tabindex=\"-1\" aria-hidden=\"true\"><img decoding=\"async\" width=\"400\" height=\"167\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2026\/01\/NeuronUP-Assessment-Nuevos-test-evaluacion.webp\" class=\"entry-image size-landscape-sm\" alt=\"NeuronUP Assessment - Nouveaux tests d&#039;\u00e9valuation\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2026\/01\/NeuronUP-Assessment-Nuevos-test-evaluacion-300x125.webp 300w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2026\/01\/NeuronUP-Assessment-Nuevos-test-evaluacion-768x320.webp 768w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2026\/01\/NeuronUP-Assessment-Nuevos-test-evaluacion-1024x427.webp 1024w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2026\/01\/NeuronUP-Assessment-Nuevos-test-evaluacion-1536x640.webp 1536w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2026\/01\/NeuronUP-Assessment-Nuevos-test-evaluacion-2048x853.webp 2048w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2026\/01\/NeuronUP-Assessment-Nuevos-test-evaluacion.webp 2400w\" sizes=\"(max-width:599px) 599px, (min-width:600px) and (max-width: 799px) 799px, (min-width:800px) and (max-width: 999px) 333px, (min-width:1000px) 400px\" \/><\/a><div class=\"entry-wrap entry-wrap-grid\"><h3 class=\"entry-title\" itemprop=\"headline\"><a class=\"entry-title-link\" href=\"https:\/\/neuronup.com\/fr\/assessment\/nouveaux-tests-d-evaluation\/\" rel=\"bookmark\">Nouveaux tests d&rsquo;\u00e9valuation d\u00e9j\u00e0 disponibles sur NeuronUP<\/a><\/h3>\n<\/div><\/article><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>Dans cet article, nous expliquons ce qu&rsquo;est une maladie rare, en mettant en avant sa d\u00e9finition, son impact mondial et les difficult\u00e9s auxquelles sont confront\u00e9s les patients. Nous d\u00e9taillons des statistiques sur sa pr\u00e9valence dans diff\u00e9rentes r\u00e9gions du monde et pr\u00e9sentons les principales caract\u00e9ristiques de ces maladies, telles que le diagnostic tardif, la douleur chronique &hellip;<\/p>\n","protected":false},"author":7,"featured_media":34014,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"categories":[604],"tags":[1129],"class_list":["type-post","category-maladies-rares","tag-enfermedades-raras","entry"],"acf":[],"_links":{"self":[{"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/posts\/33997","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/comments?post=33997"}],"version-history":[{"count":0,"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/posts\/33997\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/media\/34014"}],"wp:attachment":[{"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/media?parent=33997"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/categories?post=33997"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/neuronup.com\/fr\/wp-json\/wp\/v2\/tags?post=33997"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}