{"id":76,"date":"2025-02-19T17:19:47","date_gmt":"2025-02-19T20:19:47","guid":{"rendered":"https:\/\/institutopedromolina.org.br\/?page_id=76"},"modified":"2025-10-20T13:28:09","modified_gmt":"2025-10-20T16:28:09","slug":"direito-dos-raros","status":"publish","type":"page","link":"https:\/\/institutopedromolina.org.br\/?page_id=76","title":{"rendered":"DIREITO DOS RAROS"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"76\" class=\"elementor elementor-76\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-1aaa021 e-flex e-con-boxed e-con e-parent\" data-id=\"1aaa021\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-dbf2338 elementor-align-center elementor-icon-list--layout-traditional elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"dbf2338\" data-element_type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<ul class=\"elementor-icon-list-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-diagnoses\" viewBox=\"0 0 640 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M496 256c8.8 0 16-7.2 16-16s-7.2-16-16-16-16 7.2-16 16 7.2 16 16 16zm-176-80c48.5 0 88-39.5 88-88S368.5 0 320 0s-88 39.5-88 88 39.5 88 88 88zM59.8 364c10.2 15.3 29.3 17.8 42.9 9.8 16.2-9.6 56.2-31.7 105.3-48.6V416h224v-90.7c49.1 16.8 89.1 39 105.3 48.6 13.6 8 32.7 5.3 42.9-9.8l17.8-26.7c8.8-13.2 7.6-34.6-10-45.1-11.9-7.1-29.7-17-51.1-27.4-28.1 46.1-99.4 17.8-87.7-35.1C409.3 217.2 365.1 208 320 208c-57 0-112.9 14.5-160 32.2-.2 40.2-47.6 63.3-79.2 36-11.2 6-21.3 11.6-28.7 16-17.6 10.5-18.8 31.8-10 45.1L59.8 364zM368 344c13.3 0 24 10.7 24 24s-10.7 24-24 24-24-10.7-24-24 10.7-24 24-24zm-96-96c13.3 0 24 10.7 24 24s-10.7 24-24 24-24-10.7-24-24 10.7-24 24-24zm-160 8c8.8 0 16-7.2 16-16s-7.2-16-16-16-16 7.2-16 16 7.2 16 16 16zm512 192H16c-8.8 0-16 7.2-16 16v32c0 8.8 7.2 16 16 16h608c8.8 0 16-7.2 16-16v-32c0-8.8-7.2-16-16-16z\"><\/path><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Direito dos Raros<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\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<div class=\"elementor-element elementor-element-b30b4f1 e-grid e-con-boxed e-con e-parent\" data-id=\"b30b4f1\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-d31a8ad elementor-cta--skin-classic elementor-animated-content elementor-bg-transform elementor-bg-transform-zoom-in elementor-widget elementor-widget-call-to-action\" data-id=\"d31a8ad\" data-element_type=\"widget\" data-widget_type=\"call-to-action.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta__content\">\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<h2 class=\"elementor-cta__title elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tLei dos Raros Portaria 199\t\t\t\t\t<\/h2>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__description elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tEsta Portaria institui a Pol\u00edtica Nacional de Aten\u00e7\u00e3o Integral \u00e0s Pessoas com Doen\u00e7as Raras, aprova as Diretrizes para Aten\u00e7\u00e3o Integral \u00e0s Pessoas com Doen\u00e7as Raras no \u00e2mbito do <br> Sistema \u00danico de Sa\u00fade (SUS)\t\t\t\t\t<\/div>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__button-wrapper elementor-cta__content-item elementor-content-item \">\n\t\t\t\t\t<a class=\"elementor-cta__button elementor-button elementor-size-\" href=\"https:\/\/bvsms.saude.gov.br\/bvs\/saudelegis\/gm\/2014\/prt0199_30_01_2014.html\" target=\"_blank\">\n\t\t\t\t\t\tClique aqui\t\t\t\t\t<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\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<div class=\"elementor-element elementor-element-3f2dacb elementor-cta--skin-classic elementor-animated-content elementor-bg-transform elementor-bg-transform-zoom-in elementor-widget elementor-widget-call-to-action\" data-id=\"3f2dacb\" data-element_type=\"widget\" data-widget_type=\"call-to-action.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta__content\">\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<h2 class=\"elementor-cta__title elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tProtocolo <br> Cl\u00ednico - ELA\t\t\t\t\t<\/h2>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__description elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\t\u00c9 um documento que estabelece um conjunto de diretrizes e recomenda\u00e7\u00f5es para o diagn\u00f3stico, tratamento e acompanhamento de uma condi\u00e7\u00e3o espec\u00edfica, buscando padronizar a assist\u00eancia, otimizar resultados e garantir a seguran\u00e7a do paciente. \t\t\t\t\t<\/div>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__button-wrapper elementor-cta__content-item elementor-content-item \">\n\t\t\t\t\t<a class=\"elementor-cta__button elementor-button elementor-size-\" href=\"http:\/\/institutopedromolina.org.br\/wp-content\/uploads\/2025\/07\/PROTOCOLO-CLINICO-E-DIRETRIZES-TERAPEUTICAS-DA-ESCLEROSE-LATERAL-AMIOTROFICA-2021.pdf\" target=\"_blank\">\n\t\t\t\t\t\tClique aqui\t\t\t\t\t<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\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<div class=\"elementor-element elementor-element-2cafdd8 elementor-cta--skin-classic elementor-animated-content elementor-bg-transform elementor-bg-transform-zoom-in elementor-widget elementor-widget-call-to-action\" data-id=\"2cafdd8\" data-element_type=\"widget\" data-widget_type=\"call-to-action.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta__content\">\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<h2 class=\"elementor-cta__title elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tGuia sobre <br> ELA\t\t\t\t\t<\/h2>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__description elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tA ELA \u00e9 uma doen\u00e7a neurodegenerativa que afeta os neur\u00f4nios motores, c\u00e9lulas nervosas que controlam os m\u00fasculos, levando a fraqueza muscular progressiva, esse Guia tem o objetivo de fornecer informa\u00e7\u00f5es B\u00e1sicas.\t\t\t\t\t<\/div>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__button-wrapper elementor-cta__content-item elementor-content-item \">\n\t\t\t\t\t<a class=\"elementor-cta__button elementor-button elementor-size-\" href=\"https:\/\/youtu.be\/e0GvKXU_n-8\" target=\"_blank\">\n\t\t\t\t\t\tClique aqui\t\t\t\t\t<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\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<div class=\"elementor-element elementor-element-40a2aaa elementor-cta--skin-classic elementor-animated-content elementor-bg-transform elementor-bg-transform-zoom-in elementor-widget elementor-widget-call-to-action\" data-id=\"40a2aaa\" data-element_type=\"widget\" data-widget_type=\"call-to-action.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta\">\n\t\t\t\t\t\t\t<div class=\"elementor-cta__content\">\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<h2 class=\"elementor-cta__title elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tTratamento pelo  SUS.\t\t\t\t\t<\/h2>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__description elementor-cta__content-item elementor-content-item\">\n\t\t\t\t\t\tO Sistema \u00danico de Sa\u00fade (SUS) garante o acesso gratuito ao  tratamento da Esclerosa Lateral Amiotr\u00f3fica (ELA). \u00c9 importante saber que o tratamento envolve uma equipe multidisciplinar e o acesso a medicamentos e equipamentos espec\u00edficos.\t\t\t\t\t<\/div>\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-cta__button-wrapper elementor-cta__content-item elementor-content-item \">\n\t\t\t\t\t<a class=\"elementor-cta__button elementor-button elementor-size-\" href=\"http:\/\/institutopedromolina.org.br\/guiaela.pdf\" target=\"_blank\">\n\t\t\t\t\t\tClique aqui\t\t\t\t\t<\/a>\n\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t<\/div>\n\t\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\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Direito dos Raros Lei dos Raros Portaria 199 Esta Portaria institui a Pol\u00edtica Nacional de Aten\u00e7\u00e3o Integral \u00e0s Pessoas com Doen\u00e7as Raras, aprova as Diretrizes para Aten\u00e7\u00e3o Integral \u00e0s Pessoas com Doen\u00e7as Raras no \u00e2mbito do Sistema \u00danico de Sa\u00fade (SUS) Clique aqui Protocolo Cl\u00ednico &#8211; ELA \u00c9 um documento que estabelece um conjunto de [&hellip;]<\/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":{"footnotes":""},"class_list":["post-76","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=\/wp\/v2\/pages\/76","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=76"}],"version-history":[{"count":4,"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=\/wp\/v2\/pages\/76\/revisions"}],"predecessor-version":[{"id":841,"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=\/wp\/v2\/pages\/76\/revisions\/841"}],"wp:attachment":[{"href":"https:\/\/institutopedromolina.org.br\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=76"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}