{"id":47877,"date":"2023-12-06T09:35:27","date_gmt":"2023-12-06T12:35:27","guid":{"rendered":"https:\/\/academiadepacientes.com.br\/?p=47877"},"modified":"2023-12-06T09:48:39","modified_gmt":"2023-12-06T12:48:39","slug":"subcomissao-de-doencas-raras-faz-balanco-de-2023","status":"publish","type":"post","link":"https:\/\/academiadepacientes.com.br\/?p=47877","title":{"rendered":"Subcomiss\u00e3o de Doen\u00e7as Raras Faz Balan\u00e7o de 2023"},"content":{"rendered":"\n<p><strong>O que h\u00e1 de novo<\/strong>: A Subcomiss\u00e3o Permanente de Direitos das Pessoas com Doen\u00e7as Raras (CASRARAS) concluiu suas atividades de 2023 destacando a fiscaliza\u00e7\u00e3o do teste do pezinho. \ud83e\uddec<\/p>\n\n\n\n<p><strong>Por que isso importa<\/strong>: O relat\u00f3rio de fim de ano ressalta a import\u00e2ncia da detec\u00e7\u00e3o precoce de doen\u00e7as raras e do acesso \u00e0 sa\u00fade de qualidade. \ud83c\udfe5 A aten\u00e7\u00e3o dada a essas doen\u00e7as reflete o compromisso com a sa\u00fade p\u00fablica e a equidade no acesso a tratamentos. \ud83d\udc8a<\/p>\n\n\n\n<p><strong>O quadro geral<\/strong>:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Em 2023, a subcomiss\u00e3o realizou audi\u00eancias p\u00fablicas e uma visita t\u00e9cnica ao Instituto J\u00f4 Clemente, enfatizando a import\u00e2ncia do diagn\u00f3stico precoce e da amplia\u00e7\u00e3o do teste do pezinho. \ud83d\udcca<\/li>\n\n\n\n<li>Neste ano, foi discutida a hidrocefalia de press\u00e3o normal, com sugest\u00f5es para melhorar o tratamento no SUS. \ud83e\udde0<\/li>\n\n\n\n<li>Um <a href=\"https:\/\/www25.senado.leg.br\/web\/atividade\/materias\/-\/materia\/161344?_gl=1*3kvoiz*_ga*MTc3NTAxMDMwMS4xNzAxNjkxOTE0*_ga_CW3ZH25XMK*MTcwMTg2NDE0NC4zLjAuMTcwMTg2NDE0NC4wLjAuMA..\" target=\"_blank\" rel=\"noopener\" title=\"\">projeto de lei prop\u00f5e gratuidade no transporte p\u00fablico<\/a> para pais que levam filhos para testes diagn\u00f3sticos de doen\u00e7as raras. \ud83d\ude8c<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\"><a href=\"https:\/\/academiadepacientes.com.br\/2023-balanco-do-senado-destaca-teste-do-pezinho-e-conscientizacao\/\" target=\"_blank\" rel=\"noopener\" title=\"\">Clique aqui para saber mais<\/a><\/h2>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p>Foto de Roque de S\u00e1\/ Ag\u00eancia Senado<\/p>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile has-base-color has-contrast-2-background-color has-text-color has-background has-link-color wp-elements-b0ba4225e7c8ba6d06490acb065f7f80\" style=\"grid-template-columns:19% auto\"><figure class=\"wp-block-media-text__media\"><img data-opt-id=1402759761  fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"1024\" src=\"https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/ig:avif\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/11\/essence-focus-logo.svg\" alt=\"\" class=\"wp-image-47794 size-full\"\/><\/figure><div class=\"wp-block-media-text__content\">\n<p>Post criado com agente de IA especialmente desenvolvido por Claudio Cordovil para o blog Academia de Pacientes<\/p>\n<\/div><\/div>\n\n\n\n<p>Fonte: Ag\u00eancia Senado<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A Subcomiss\u00e3o Permanente de Direitos das Pessoas com Doen\u00e7as Raras (CASRARAS) concluiu suas atividades de 2023 destacando a fiscaliza\u00e7\u00e3o do teste do pezinho.<\/p>\n","protected":false},"author":2,"featured_media":47881,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_uag_custom_page_level_css":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[92],"tags":[],"class_list":["post-47877","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias","infinite-scroll-item","resize-featured-image"],"aioseo_notices":[],"uagb_featured_image_src":{"full":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",860,570,false],"thumbnail":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:150\/h:150\/q:mauto\/rt:fill\/g:ce\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",150,150,true],"medium":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:300\/h:199\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",300,199,true],"medium_large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:768\/h:509\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",768,509,true],"large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",860,570,false],"1536x1536":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",860,570,false],"2048x2048":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",860,570,false],"mailpoet_newsletter_max":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2023\/12\/mara-gabrilli.jpeg",860,570,false]},"uagb_author_info":{"display_name":"Cl\u00e1udio Cordovil","author_link":"https:\/\/academiadepacientes.com.br\/?author=2"},"uagb_comment_info":0,"uagb_excerpt":"A Subcomiss\u00e3o Permanente de Direitos das Pessoas com Doen\u00e7as Raras (CASRARAS) concluiu suas atividades de 2023 destacando a fiscaliza\u00e7\u00e3o do teste do pezinho.","_links":{"self":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/47877","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=47877"}],"version-history":[{"count":6,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/47877\/revisions"}],"predecessor-version":[{"id":47897,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/47877\/revisions\/47897"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/media\/47881"}],"wp:attachment":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=47877"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=47877"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=47877"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}