{"id":33997,"date":"2025-09-29T10:02:18","date_gmt":"2025-09-29T10:02:18","guid":{"rendered":"https:\/\/neuronup.com\/?p=33997"},"modified":"2026-01-29T17:39:37","modified_gmt":"2026-01-29T15:39:37","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&#8217;est une maladie rare<\/strong>, en mettant en \u00e9vidence<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\" src=\"https:\/\/neuronup.com\/wp-content\/uploads\/2024\/10\/infografia-enfermedades-raras.webp\" alt=\"Petite fille debout, cape jaune et t-shirt rose, masque de super-h\u00e9ros et ruban jaune en main, sourire joyeux.\" class=\"wp-image-34000\"\/><\/figure>\n<\/div>\n\n\n<h2 class=\"wp-block-heading\">Qu&#8217;est-ce qu&#8217;une maladie rare&nbsp;?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">On consid\u00e8re qu&#8217;une maladie est rare lorsqu&#8217;elle touche un nombre limit\u00e9 de la population totale, d\u00e9fini en Europe comme <strong>moins d&#8217;une personne sur 2 000.&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<li>3 millions d&rsquo;Espagnols<\/li>\n<li>30 millions d&rsquo;Europ\u00e9ens<\/li>\n<li>25 millions d&rsquo;Am\u00e9ricains du Nord<\/li>\n<li>42 millions d&rsquo;ib\u00e9ro-am\u00e9ricains<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">On estime qu&rsquo;il existe aujourd&rsquo;hui entre 5 000 et 7 000 maladies rares.<\/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<li><strong>Douleurs chroniques<\/strong> : 1 patient sur 5<\/li>\n<li><strong>Handicap de l&rsquo;autonomie<\/strong> : 1 cas sur 3<\/li>\n<li><strong>Pronostic vital engag\u00e9<\/strong> : les maladies rares peuvent \u00eatre \u00e0 l&rsquo;origine d&rsquo;un grand nombre 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\n<figure class=\"wp-block-image size-full image-interface\"><img decoding=\"async\" width=\"875\" height=\"224\" src=\"https:\/\/neuronup.com\/wp-content\/uploads\/2024\/10\/Infografia-enfermedades-raras-02.webp\" alt=\"Infographie: trois cercles partiellement remplis montrant les d\u00e9c\u00e8s par \u00e2ge en maladies rares (35% avant 1 an; 10% 1\u20135 ans; 12% 5\u201315 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.webp 875w\" sizes=\"(max-width: 875px) 100vw, 875px\" \/><figcaption class=\"wp-element-caption\">Pourcentages des maladies rares<\/figcaption><\/figure>\n\n\n\n<h2 class=\"wp-block-heading\">Diagnostic des maladies rares<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">En moyenne, il s&rsquo;\u00e9coule <strong>5 ans<\/strong> entre l&rsquo;apparition des premiers sympt\u00f4mes et l&rsquo;obtention d&rsquo;un diagnostic d&rsquo;une maladie rare. 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<li>26,7 % re\u00e7oit un traitement inadapt\u00e9<\/li>\n<li>26,8 % voient leur maladie s&rsquo;aggraver<\/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 m\u00e9dicale des maladies rares<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">46,6 % ne se sentent pas satisfaits des soins re\u00e7us.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">D\u00e9placements pour obtenir un diagnostic ou un traitement<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">50 % des patients ont d\u00fb voyager hors de leur province ces derni\u00e8res ann\u00e9es \u00e0 cause 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 \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 \u00e0 cause 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 un certificat de handicap.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Si vous avez aim\u00e9 cet article sur les maladies rares, il se peut que d&rsquo;autres articles similaires vous int\u00e9ressent&nbsp;:<\/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\" style=\"--columns-xs:1\/1;--columns-sm:1\/1;--columns-md:1\/3;--columns-lg:1\/3;--flex-xs:0 0 var(--flex-basis);--flex-sm:0 0 var(--flex-basis);--flex-md:0 0 var(--flex-basis);--flex-lg:0 0 var(--flex-basis);--column-gap:var(--spacing-lg);--row-gap:var(--spacing-lg);--align-columns:start;\"><article class=\"entry entry-grid is-column has-entry-link has-image has-image-first type-post category-maladies-neurodegeneratives tag-maladies-neurodegeneratives tag-personnes-agees tag-stimulation-cognitive\" style=\"--entry-index:1;\" aria-label=\"La musicoth\u00e9rapie dans le traitement de la d\u00e9mence : avantages, types et impact sur le cerveau\" itemscope itemtype=\"https:\/\/schema.org\/CreativeWork\"><a class=\"entry-image-link\" href=\"https:\/\/neuronup.com\/fr\/actualites-de-la-stimulation-cognitive\/maladies-neurodegeneratives\/la-musicotherapie-dans-le-traitement-de-la-demence-avantages-types-et-impact-sur-le-cerveau\/\" tabindex=\"-1\" aria-hidden=\"true\"><img decoding=\"async\" width=\"400\" height=\"300\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2025\/04\/La-musicotherapie-dans-le-traitement-de-la-demence-avantages-types-et-impact-sur-le-cerveau-400x300.webp\" class=\"entry-image size-landscape-sm\" alt=\"Portrait d&#039;une femme \u00e2g\u00e9e souriante portant des \u00e9couteurs, assise sur un canap\u00e9 moderne et tenant un smartphone.\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2025\/04\/La-musicotherapie-dans-le-traitement-de-la-demence-avantages-types-et-impact-sur-le-cerveau-400x300.webp 400w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2025\/04\/La-musicotherapie-dans-le-traitement-de-la-demence-avantages-types-et-impact-sur-le-cerveau-800x600.webp 800w\" 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Ciro et Gustavo; ic\u00f4ne haut-parleur pr\u00e8s de chaque nom.\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/10\/Juego-para-recordar-los-nombres-300x209.webp 300w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/10\/Juego-para-recordar-los-nombres-768x536.webp 768w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/10\/Juego-para-recordar-los-nombres-1024x714.webp 1024w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2023\/10\/Juego-para-recordar-los-nombres.webp 1200w\" 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\/activites-de-neuro-reeducation\/activites-pour-les-fonctions-cognitives\/activites-de-la-memoire\/jeu-pour-se-souvenir-des-noms\/\" rel=\"bookmark\">Jeu pour se souvenir des noms (texte)<\/a><\/h3>\n<\/div><\/article><article class=\"entry entry-grid is-column has-entry-link has-image has-image-first type-post category-memoire tag-memoire tag-stimulation-cognitive\" style=\"--entry-index:6;\" aria-label=\"10 conseils pour am\u00e9liorer la m\u00e9moire et la sant\u00e9 cognitive\" itemscope itemtype=\"https:\/\/schema.org\/CreativeWork\"><a class=\"entry-image-link\" href=\"https:\/\/neuronup.com\/fr\/neurosciences\/neuropsychologie-et-informations\/memoire\/10-conseils-pour-ameliorer-la-memoire-et-la-sante-cognitive\/\" tabindex=\"-1\" aria-hidden=\"true\"><img decoding=\"async\" width=\"400\" height=\"267\" src=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Memoria-corporizada.webp\" class=\"entry-image size-landscape-sm\" alt=\"Deux pi\u00e8ces de puzzle forment la silhouette de deux cerveaux, l\u2019un orange et l\u2019autre blanc, sur un fond orange uni.\" srcset=\"https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Memoria-corporizada-300x200.webp 300w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Memoria-corporizada-768x512.webp 768w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Memoria-corporizada-1024x683.webp 1024w, https:\/\/neuronup.com\/fr\/wp-content\/uploads\/2024\/10\/Memoria-corporizada.webp 1200w\" 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\/neurosciences\/neuropsychologie-et-informations\/memoire\/10-conseils-pour-ameliorer-la-memoire-et-la-sante-cognitive\/\" rel=\"bookmark\">10 conseils pour am\u00e9liorer la m\u00e9moire et la sant\u00e9 cognitive<\/a><\/h3>\n<\/div><\/article><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>Dans cet article, nous expliquons ce qu&#8217;est une maladie rare, en mettant en \u00e9vidence 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":[881],"class_list":["type-post","category-maladies-rares","tag-maladies-rares","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}]}}