{"id":24176,"date":"2013-03-01T14:34:47","date_gmt":"2013-03-01T17:34:47","guid":{"rendered":"http:\/\/www.inclusive.org.br\/?p=24176"},"modified":"2013-03-01T14:34:47","modified_gmt":"2013-03-01T17:34:47","slug":"portadores-de-doencas-raras-viram-especialistas-por-falta-de-apoio","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=24176","title":{"rendered":"Portadores de doen\u00e7as raras viram especialistas por falta de apoio"},"content":{"rendered":"
\"\"
<\/figcaption><\/figure>\n

Embora n\u00e3o citem os estudos cient\u00edficos que embasem seus c\u00e1lculos, especialistas apresentaram uma estimativa de que cerca de 15 milh\u00f5es de brasileiros t\u00eam alguma das cerca de 8 mil s\u00edndromes catalogadas como doen\u00e7as raras.<\/p>\n

Neurofibromatose, mucopolissacaridose, s\u00edndrome de Gaucher, esclerose lateral amiotr\u00f3fica e leucoencefalopatia multifocal progressiva s\u00e3o exemplos dessas patologias.<\/p>\n

Em entrevista \u00e0 Ag\u00eancia Brasil, o professor do Departamento de Sa\u00fade Coletiva da Universidade de Bras\u00edlia (UnB), Natan Monsores, criticou o tempo de espera enfrentado pela maioria desses pacientes para serem acolhidos no sistema de sa\u00fade: “O tempo de diagn\u00f3stico demora algo em torno de tr\u00eas a cinco anos. O itiner\u00e1rio de diagn\u00f3stico do paciente \u00e9 muito longo.”<\/p>\n

Ele acredita que 70% dos problemas relacionados \u00e0s doen\u00e7as raras seriam resolvidos por meio de um sistema claro de informa\u00e7\u00f5es sobre essas s\u00edndromes: “Boa parte dos pacientes fica perdida dentro do SUS [Sistema \u00danico de Sa\u00fade] por n\u00e3o saber ao certo que especialista buscar, onde s\u00e3o os centros de refer\u00eancia.”<\/p>\n

Paciente especialista<\/p>\n

Segundo Monsores, a falta de informa\u00e7\u00e3o acaba resultando no que muitos m\u00e9dicos chamam de “paciente especialista”, j\u00e1 que algumas pessoas afetadas pelas s\u00edndromes passam a conhecer mais o problema que os pr\u00f3prios profissionais de sa\u00fade.<\/p>\n

Ele lembrou que pacientes e parentes se re\u00fanem pela internet e por meio de associa\u00e7\u00f5es para trocar informa\u00e7\u00f5es, por exemplo, sobre tratamentos dispon\u00edveis.<\/p>\n

O professor destacou que h\u00e1 uma judicializa\u00e7\u00e3o excessiva no campo das doen\u00e7as raras.<\/p>\n

“Pelo fato de esses pacientes terem doen\u00e7as muito peculiares, eles s\u00e3o alvo de incurs\u00f5es da ind\u00fastria farmac\u00eautica. A gente sabe disso por relato de pacientes que s\u00e3o assediados por advogados para que entrem na Justi\u00e7a com processos contra o governo para obter medicamentos”, relatou.<\/p>\n

O Minist\u00e9rio da Sa\u00fade anunciou nessa quarta-feira que vai colocar em consulta p\u00fablica nas pr\u00f3ximas semanas dois documentos que dever\u00e3o dar origem a uma pol\u00edtica p\u00fablica espec\u00edfica para pessoas portadoras de doen\u00e7as raras.<\/p>\n

Fonte: Di\u00e1rio da Sa\u00fade<\/p>\n","protected":false},"excerpt":{"rendered":"

Embora n\u00e3o citem os estudos cient\u00edficos que embasem seus c\u00e1lculos, especialistas apresentaram uma estimativa de que cerca de 15 milh\u00f5es de brasileiros t\u00eam alguma das cerca de 8 mil s\u00edndromes catalogadas como doen\u00e7as raras.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-container-style":"default","site-container-layout":"default","site-sidebar-layout":"default","disable-article-header":"default","disable-site-header":"default","disable-site-footer":"default","disable-content-area-spacing":"default","footnotes":""},"categories":[4],"tags":[],"class_list":["post-24176","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"\nPortadores de doen\u00e7as raras viram especialistas por falta de apoio -<\/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:\/\/inclusivenews.com.br\/?p=24176\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Portadores de doen\u00e7as raras viram especialistas por falta de apoio -\" \/>\n<meta property=\"og:description\" content=\"Embora n\u00e3o citem os estudos cient\u00edficos que embasem seus c\u00e1lculos, especialistas apresentaram uma estimativa de que cerca de 15 milh\u00f5es de brasileiros t\u00eam alguma das cerca de 8 mil s\u00edndromes catalogadas como doen\u00e7as raras.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/inclusivenews.com.br\/?p=24176\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/agenciainclusive\/\" \/>\n<meta property=\"article:published_time\" content=\"2013-03-01T17:34:47+00:00\" \/>\n<meta name=\"author\" content=\"inclusivenews2024\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"inclusivenews2024\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tempo estimado de leitura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176\"},\"author\":{\"name\":\"inclusivenews2024\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#\\\/schema\\\/person\\\/ae4ec7087559b8692fb33b6fffd2273b\"},\"headline\":\"Portadores de doen\u00e7as raras viram especialistas por falta de apoio\",\"datePublished\":\"2013-03-01T17:34:47+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176\"},\"wordCount\":379,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#organization\"},\"articleSection\":[\"NOT\u00cdCIAS\"],\"inLanguage\":\"pt-PT\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176\",\"url\":\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176\",\"name\":\"Portadores de doen\u00e7as raras viram especialistas por falta de apoio -\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#website\"},\"datePublished\":\"2013-03-01T17:34:47+00:00\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176#breadcrumb\"},\"inLanguage\":\"pt-PT\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/?p=24176#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"In\u00edcio\",\"item\":\"https:\\\/\\\/inclusivenews.com.br\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Portadores de doen\u00e7as raras viram especialistas por falta de apoio\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#website\",\"url\":\"https:\\\/\\\/inclusivenews.com.br\\\/\",\"name\":\"Inclusive News\",\"description\":\"Inclusive News\",\"publisher\":{\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/inclusivenews.com.br\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"pt-PT\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#organization\",\"name\":\"Inclusive - inclus\u00e3o e cidadania\",\"url\":\"https:\\\/\\\/inclusivenews.com.br\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"pt-PT\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/inclusivenews.com.br\\\/wp-content\\\/uploads\\\/2024\\\/03\\\/@grandesite.png\",\"contentUrl\":\"https:\\\/\\\/inclusivenews.com.br\\\/wp-content\\\/uploads\\\/2024\\\/03\\\/@grandesite.png\",\"width\":1080,\"height\":1080,\"caption\":\"Inclusive - inclus\u00e3o e cidadania\"},\"image\":{\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#\\\/schema\\\/logo\\\/image\\\/\"},\"sameAs\":[\"https:\\\/\\\/www.facebook.com\\\/agenciainclusive\\\/\",\"https:\\\/\\\/www.instagram.com\\\/newsinclusive\\\/\"]},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/inclusivenews.com.br\\\/#\\\/schema\\\/person\\\/ae4ec7087559b8692fb33b6fffd2273b\",\"name\":\"inclusivenews2024\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"pt-PT\",\"@id\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c5a7ef84c66fa914f55bc4f7ce26cfa275a3b9a1c5568b907bd184fb4dde7b40?s=96&d=mm&r=g\",\"url\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c5a7ef84c66fa914f55bc4f7ce26cfa275a3b9a1c5568b907bd184fb4dde7b40?s=96&d=mm&r=g\",\"contentUrl\":\"https:\\\/\\\/secure.gravatar.com\\\/avatar\\\/c5a7ef84c66fa914f55bc4f7ce26cfa275a3b9a1c5568b907bd184fb4dde7b40?s=96&d=mm&r=g\",\"caption\":\"inclusivenews2024\"},\"sameAs\":[\"https:\\\/\\\/inclusivenews.com.br\"],\"url\":\"https:\\\/\\\/inclusivenews.com.br\\\/?author=1\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Portadores de doen\u00e7as raras viram especialistas por falta de apoio -","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/inclusivenews.com.br\/?p=24176","og_locale":"pt_PT","og_type":"article","og_title":"Portadores de doen\u00e7as raras viram especialistas por falta de apoio -","og_description":"Embora n\u00e3o citem os estudos cient\u00edficos que embasem seus c\u00e1lculos, especialistas apresentaram uma estimativa de que cerca de 15 milh\u00f5es de brasileiros t\u00eam alguma das cerca de 8 mil s\u00edndromes catalogadas como doen\u00e7as raras.","og_url":"https:\/\/inclusivenews.com.br\/?p=24176","article_publisher":"https:\/\/www.facebook.com\/agenciainclusive\/","article_published_time":"2013-03-01T17:34:47+00:00","author":"inclusivenews2024","twitter_card":"summary_large_image","twitter_misc":{"Escrito por":"inclusivenews2024","Tempo estimado de leitura":"2 minutos"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/inclusivenews.com.br\/?p=24176#article","isPartOf":{"@id":"https:\/\/inclusivenews.com.br\/?p=24176"},"author":{"name":"inclusivenews2024","@id":"https:\/\/inclusivenews.com.br\/#\/schema\/person\/ae4ec7087559b8692fb33b6fffd2273b"},"headline":"Portadores de doen\u00e7as raras viram especialistas por falta de apoio","datePublished":"2013-03-01T17:34:47+00:00","mainEntityOfPage":{"@id":"https:\/\/inclusivenews.com.br\/?p=24176"},"wordCount":379,"commentCount":0,"publisher":{"@id":"https:\/\/inclusivenews.com.br\/#organization"},"articleSection":["NOT\u00cdCIAS"],"inLanguage":"pt-PT","potentialAction":[{"@type":"CommentAction","name":"Comment","target":["https:\/\/inclusivenews.com.br\/?p=24176#respond"]}]},{"@type":"WebPage","@id":"https:\/\/inclusivenews.com.br\/?p=24176","url":"https:\/\/inclusivenews.com.br\/?p=24176","name":"Portadores de doen\u00e7as raras viram especialistas por falta de apoio -","isPartOf":{"@id":"https:\/\/inclusivenews.com.br\/#website"},"datePublished":"2013-03-01T17:34:47+00:00","breadcrumb":{"@id":"https:\/\/inclusivenews.com.br\/?p=24176#breadcrumb"},"inLanguage":"pt-PT","potentialAction":[{"@type":"ReadAction","target":["https:\/\/inclusivenews.com.br\/?p=24176"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/inclusivenews.com.br\/?p=24176#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"In\u00edcio","item":"https:\/\/inclusivenews.com.br\/"},{"@type":"ListItem","position":2,"name":"Portadores de doen\u00e7as raras viram especialistas por falta de apoio"}]},{"@type":"WebSite","@id":"https:\/\/inclusivenews.com.br\/#website","url":"https:\/\/inclusivenews.com.br\/","name":"Inclusive News","description":"Inclusive News","publisher":{"@id":"https:\/\/inclusivenews.com.br\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/inclusivenews.com.br\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"pt-PT"},{"@type":"Organization","@id":"https:\/\/inclusivenews.com.br\/#organization","name":"Inclusive - inclus\u00e3o e cidadania","url":"https:\/\/inclusivenews.com.br\/","logo":{"@type":"ImageObject","inLanguage":"pt-PT","@id":"https:\/\/inclusivenews.com.br\/#\/schema\/logo\/image\/","url":"https:\/\/inclusivenews.com.br\/wp-content\/uploads\/2024\/03\/@grandesite.png","contentUrl":"https:\/\/inclusivenews.com.br\/wp-content\/uploads\/2024\/03\/@grandesite.png","width":1080,"height":1080,"caption":"Inclusive - inclus\u00e3o e cidadania"},"image":{"@id":"https:\/\/inclusivenews.com.br\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/agenciainclusive\/","https:\/\/www.instagram.com\/newsinclusive\/"]},{"@type":"Person","@id":"https:\/\/inclusivenews.com.br\/#\/schema\/person\/ae4ec7087559b8692fb33b6fffd2273b","name":"inclusivenews2024","image":{"@type":"ImageObject","inLanguage":"pt-PT","@id":"https:\/\/secure.gravatar.com\/avatar\/c5a7ef84c66fa914f55bc4f7ce26cfa275a3b9a1c5568b907bd184fb4dde7b40?s=96&d=mm&r=g","url":"https:\/\/secure.gravatar.com\/avatar\/c5a7ef84c66fa914f55bc4f7ce26cfa275a3b9a1c5568b907bd184fb4dde7b40?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/c5a7ef84c66fa914f55bc4f7ce26cfa275a3b9a1c5568b907bd184fb4dde7b40?s=96&d=mm&r=g","caption":"inclusivenews2024"},"sameAs":["https:\/\/inclusivenews.com.br"],"url":"https:\/\/inclusivenews.com.br\/?author=1"}]}},"_links":{"self":[{"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=\/wp\/v2\/posts\/24176","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=24176"}],"version-history":[{"count":0,"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=\/wp\/v2\/posts\/24176\/revisions"}],"wp:attachment":[{"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=24176"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=24176"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/inclusivenews.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=24176"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}