{"id":6258,"date":"2024-06-26T16:57:53","date_gmt":"2024-06-26T14:57:53","guid":{"rendered":"https:\/\/apaiser.org\/newsite\/?page_id=6258"},"modified":"2026-02-03T17:27:25","modified_gmt":"2026-02-03T16:27:25","slug":"documents-officiels","status":"publish","type":"page","link":"https:\/\/apaiser.org\/newsite\/documents-officiels\/","title":{"rendered":"Documents officiels"},"content":{"rendered":"\t\t
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M\u00e9diath\u00e8que<\/h2>\t\t\t\t<\/div>\n\t\t\t\t
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Accueil<\/a> \/M\u00e9diath\u00e8que \/Documents officiels<\/a>\n<\/span><\/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\t\t<\/div>\n\t\t

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\n\t\t\t\t\t\t\t\t\n\t\t\t\tDocuments officiels \n\t\t\t<\/h1 > \n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Le Plan national Maladies Rares (PNMR)<\/h3>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Sous l\u2019impulsion du mouvement associatif, les maladies rares ont \u00e9t\u00e9 officiellement reconnues comme l\u2019une des quatre priorit\u00e9s de sant\u00e9 publique par la loi Sant\u00e9 publique du 9 ao\u00fbt 2004, pr\u00e9voyant la mise en \u0153uvre du premier plan national maladies rares en 2005. A ce jour 4 PNMR ont \u00e9t\u00e9 publi\u00e9s, pour organiser le diagnostic et la prise en charge des patients souffrant de maladie rare, et d\u00e9finir des actions prioritaires ainsi qu’un programme prioritaire de recherche (PPR).<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t

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T\u00e9l\u00e9charger le PNMR4 (2025-2030)<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t
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T\u00e9l\u00e9charger le rapport d'\u00e9valuation du PNMR3 (2018-2022)<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Les Protocoles nationaux de Diagnostic et de Soin (PNDS)<\/h3>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Les Protocoles nationaux de Diagnostic et de Soins (PNDS) sont des r\u00e9f\u00e9rentiels de bonne pratique portant sur les maladies rares. L\u2019objectif d\u2019un PNDS est d\u2019expliciter aux professionnels concern\u00e9s la prise en charge diagnostique et th\u00e9rapeutique optimale et le parcours de soins d\u2019un patient atteint d\u2019une maladie rare donn\u00e9e.\u00a0\u00a0Depuis le deuxi\u00e8me plan national maladies rares 2011-2014, ils sont \u00e9labor\u00e9s par les centres de r\u00e9f\u00e9rence et de comp\u00e9tence maladies rares, collaboration avec les associations repr\u00e9sentatives des patients concern\u00e9s.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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T\u00e9l\u00e9charger le PNDS Chiari<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t
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T\u00e9l\u00e9charger la synth\u00e8se pour les m\u00e9decins traitants<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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T\u00e9l\u00e9charger le PNDS Syringomy\u00e9lie<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t
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T\u00e9l\u00e9charger la synth\u00e8se pour les m\u00e9decins traitants<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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Autres documents \u00e0 t\u00e9l\u00e9charger<\/h3>\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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T\u00e9l\u00e9charger le d\u00e9cret \u00e9tablissant la liste des ALD<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t
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T\u00e9l\u00e9charger le formulaire de demande de prestation handicap<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t
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T\u00e9l\u00e9charger le formulaire de prise en charge des frais de transport<\/a><\/h3><\/div><\/div>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t
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M\u00e9diath\u00e8que Accueil \/M\u00e9diath\u00e8que \/Documents officiels Documents officiels Le Plan national Maladies Rares (PNMR) Sous l\u2019impulsion du mouvement associatif, les maladies rares ont \u00e9t\u00e9 officiellement reconnues comme l\u2019une des quatre priorit\u00e9s […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"elementor_header_footer","meta":{"inline_featured_image":false,"footnotes":""},"class_list":["post-6258","page","type-page","status-publish","hentry"],"yoast_head":"\nDocuments officiels - Apaiser S&C<\/title>\n<meta name=\"description\" content=\"T\u00e9l\u00e9charger les documents officiels sur la syringomy\u00e9lie et la malformation de Chiari\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/apaiser.org\/newsite\/documents-officiels\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Documents officiels - 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