{"id":2499,"date":"2023-02-22T11:58:51","date_gmt":"2023-02-22T10:58:51","guid":{"rendered":"https:\/\/afpca.fr\/site\/?p=2499"},"modified":"2023-12-21T20:25:05","modified_gmt":"2023-12-21T19:25:05","slug":"vivre-avec-une-maladie-rare-en-france","status":"publish","type":"post","link":"https:\/\/afpca.fr\/site\/vivre-avec-une-maladie-rare-en-france\/","title":{"rendered":"D\u00e9cembre 2022 : vivre avec une maladie rare en France"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"2499\" class=\"elementor elementor-2499\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-3893148 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"3893148\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-20c836bf\" data-id=\"20c836bf\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-81a34f9 elementor-widget elementor-widget-text-editor\" data-id=\"81a34f9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>En Europe, une maladie est dite rare lorsqu\u2019elle concerne un nombre restreint de personnes :<br><strong>1<\/strong> personne sur <strong>2 000<\/strong> en population g\u00e9n\u00e9rale. On compte actuellement plus de 6 000 maladies rares qui affecteraient environ 3 millions de personnes en France.<\/p>\n<p>Le cahier Vivre avec une maladie rare pr\u00e9sente les aides (humaines, financi\u00e8res et techniques) et les prestations permettant<br>aux personnes atteintes de maladies rares (en situation de handicap ou non) et \u00e0 leurs proches de b\u00e9n\u00e9ficier d\u2019un<br>accompagnement et de s\u2019inscrire dans la soci\u00e9t\u00e9 au m\u00eame titre que des personnes valides.<\/p>\n<p>Ce document initialement cr\u00e9\u00e9 dans le cadre d\u2019une convention entre la direction g\u00e9n\u00e9rale de la sant\u00e9 et l\u2019Inserm (institut<br>national de la sant\u00e9 et de la recherche m\u00e9dicale) pour la mise en \u0153uvre de l\u2019axe 3 du premier plan national maladies rares<br>(PNMR1) (2005-2008) relatif \u00e0 l\u2019acc\u00e8s \u00e0 l\u2019information est mis \u00e0 jour annuellement en application de l\u2019axe A-7 du deuxi\u00e8me plan<br>national maladies rares (PNMR2) (2011-2014 \/ prolongation 2016).<\/p>\n<p>Le troisi\u00e8me plan (PNMR3) 2018-2022 renouvelle cette mission d\u2019information sur les ressources et le parcours de soin.<br>Ce cahier Orphanet est con\u00e7u par un comit\u00e9 \u00e9ditorial multidisciplinaire compos\u00e9 par des repr\u00e9sentants de la direction g\u00e9n\u00e9rale<br>de l\u2019offre de soins (Mission maladies rares, DGOS), de la direction g\u00e9n\u00e9rale de la coh\u00e9sion sociale (DGCS), de la direction<br>g\u00e9n\u00e9rale de l\u2019enseignement scolaire (DGESCO), de l\u2019institut national sup\u00e9rieur de formation et de recherche pour l\u2019\u00e9ducation<br>des jeunes handicap\u00e9s et les enseignements adapt\u00e9s (Inshea), de l\u2019alliance maladies rares, de maladies rares info services, et<br>de l\u2019association fran\u00e7aise contre les myopathies (AFM -T\u00e9l\u00e9thon).<\/p>\n<p><strong><a href=\"https:\/\/www.orpha.net\/orphacom\/cahiers\/docs\/FR\/Vivre_avec_une_maladie_rare_en_France.pdf\">Vous pouvez d\u00e9couvrir le document de d\u00e9cembre 2022 qui a \u00e9t\u00e9 mis \u00e0 jour par le comit\u00e9 \u00e9ditorial multidisciplinaire cit\u00e9 ci-dessus avec la participation de la caisse <\/a><\/strong>nationale de solidarit\u00e9 pour l\u2019autonomie (CNSA) et de la caisse nationale de l\u2019assurance maladie (Cnam).<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-8004c68 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"8004c68\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-f304958\" data-id=\"f304958\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-db0b98f elementor-widget elementor-widget-image\" data-id=\"db0b98f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<a href=\"https:\/\/www.orpha.net\/orphacom\/cahiers\/docs\/FR\/Vivre_avec_une_maladie_rare_en_France.pdf\">\n\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"720\" height=\"465\" src=\"https:\/\/afpca.fr\/site\/wp-content\/uploads\/2023\/02\/Capture.png\" class=\"attachment-large size-large wp-image-2687\" alt=\"\" srcset=\"https:\/\/afpca.fr\/site\/wp-content\/uploads\/2023\/02\/Capture.png 774w, https:\/\/afpca.fr\/site\/wp-content\/uploads\/2023\/02\/Capture-300x194.png 300w, https:\/\/afpca.fr\/site\/wp-content\/uploads\/2023\/02\/Capture-768x496.png 768w\" sizes=\"(max-width: 720px) 100vw, 720px\" \/>\t\t\t\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>En Europe, une maladie est dite rare lorsqu\u2019elle concerne un nombre restreint de personnes :1 personne sur 2 000 en population g\u00e9n\u00e9rale. On compte actuellement plus de 6 000 maladies rares qui affecteraient environ 3 millions de personnes en France. Le cahier Vivre avec une maladie rare pr\u00e9sente les aides (humaines, financi\u00e8res et techniques) et [&hellip;]<\/p>\n","protected":false},"author":10,"featured_media":2500,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":{"0":"post-2499","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","6":"hentry","7":"category-non-classe","9":"post-with-thumbnail","10":"post-with-thumbnail-large"},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>D\u00e9cembre 2022 : vivre avec une maladie rare en France - Association Francophone Contre La Polychondrite Chronique Atrophiante<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/afpca.fr\/site\/vivre-avec-une-maladie-rare-en-france\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"D\u00e9cembre 2022 : vivre avec une maladie rare en France - Association Francophone Contre La Polychondrite Chronique Atrophiante\" \/>\n<meta property=\"og:description\" content=\"En Europe, une maladie est dite rare lorsqu\u2019elle concerne un nombre restreint de personnes :1 personne sur 2 000 en population g\u00e9n\u00e9rale. On compte actuellement plus de 6 000 maladies rares qui affecteraient environ 3 millions de personnes en France. 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