{"id":28367,"date":"2025-06-05T17:06:47","date_gmt":"2025-06-05T20:06:47","guid":{"rendered":"https:\/\/miradouronoticias.com\/site\/?p=28367"},"modified":"2025-06-05T17:06:47","modified_gmt":"2025-06-05T20:06:47","slug":"podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico","status":"publish","type":"post","link":"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/","title":{"rendered":"Podcast conta o que s\u00e3o doen\u00e7as raras e ajuda na busca do diagn\u00f3stico"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-28368\" src=\"https:\/\/miradouronoticias.com\/site\/wp-content\/uploads\/2025\/06\/banner_1170x700_25-300x179.webp\" alt=\"\" width=\"300\" height=\"179\" srcset=\"https:\/\/miradouronoticias.com\/site\/wp-content\/uploads\/2025\/06\/banner_1170x700_25-300x179.webp 300w, https:\/\/miradouronoticias.com\/site\/wp-content\/uploads\/2025\/06\/banner_1170x700_25-1024x613.webp 1024w, https:\/\/miradouronoticias.com\/site\/wp-content\/uploads\/2025\/06\/banner_1170x700_25-768x459.webp 768w, https:\/\/miradouronoticias.com\/site\/wp-content\/uploads\/2025\/06\/banner_1170x700_25.webp 1170w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><\/p>\n<header id=\"header-site\" class=\"header-site full-width rel-position\">\n<div class=\"header-veiculo full-width\">\n<aside id=\"nav-menu-mobile\" class=\"nav-menu-mobile\">&nbsp;<\/p>\n<\/aside>\n<\/div>\n<div class=\"header-editorias rowflex full-width\"><\/div>\n<\/header>\n<p><main class=\"main-site\"><\/p>\n<div class=\"region region-content\">\n<div id=\"block-system-main\" class=\"block block-system\">\n<div class=\"content\">\n<div id=\"panel\" class=\"container-noticia rel-position\">\n<div id=\"node-1645280\" class=\"node node-conteudo clearfix\">\n<div class=\"conteudo-noticia\">\n<p>Um podcast original da\u00a0<strong>Radioag\u00eancia Nacional<\/strong>, o\u00a0VideBula,\u00a0explica esta semana o que s\u00e3o doen\u00e7as\u00a0raras e orienta sobre os caminhos para o diagn\u00f3stico. Com um\u00a0<a href=\"https:\/\/agenciabrasil.ebc.com.br\/radioagencia-nacional\/tags\/podcasts-radioagencia-nacional\" target=\"_blank\" rel=\"noopener\">epis\u00f3dio novo<\/a>\u00a0todas as ter\u00e7as-feiras, o programa leva ao p\u00fablico informa\u00e7\u00e3o sobre sa\u00fade e direitos, de forma clara, acess\u00edvel e\u00a0livre de burocracia, sempre com os esclarecimentos de especialistas.<img decoding=\"async\" src=\"https:\/\/agenciabrasil.ebc.com.br\/ebc.png?id=1645280&amp;o=node\" \/><img decoding=\"async\" src=\"https:\/\/agenciabrasil.ebc.com.br\/ebc.gif?id=1645280&amp;o=node\" \/><\/p>\n<p>As doen\u00e7as raras\u00a0s\u00e3o aquelas patologias que acometem at\u00e9 65 pessoas a cada 100 mil.\u00a0<strong>Para desconfiar de uma doen\u00e7a rara \u00e9 preciso\u00a0observar sintomas persistentes que n\u00e3o melhoram com tratamentos convencionais.\u00a0Muitas doen\u00e7as raras apresentam sintomas parecidos com os de outras condi\u00e7\u00f5es comuns, como viroses. A\u00a0diferen\u00e7a \u00e9 que, no caso de patologias raras, os sintomas\u00a0aparecem em diferentes momentos do ano, com gatilhos variados.<\/strong><\/p>\n<p>No programa desta semana, as apresentadoras Patr\u00edcia Serr\u00e3o e Ra\u00edssa Saraiva explicam que existem entre 6 mil e 8 mil doen\u00e7as raras no mundo, divididas entre s\u00edndromes, defici\u00eancias, dele\u00e7\u00f5es gen\u00e9ticas, doen\u00e7as autoimunes, autoinflamat\u00f3rias e ambientais. A maioria \u00e9 de origem gen\u00e9tica.<\/p>\n<p>O estudo dessas doen\u00e7as \u00e9 muito complexo, e por isso elas s\u00e3o consideradas raras. H\u00e1 cerca de 13 milh\u00f5es de pessoas no Brasil vivendo com essas condi\u00e7\u00f5es.<\/p>\n<p>Com esse n\u00famero t\u00e3o alto de patologias, muitos m\u00e9dicos podem nunca ter visto uma determinada doen\u00e7a rara.\u00a0<strong>Assim, ao buscar o diagn\u00f3stico, o\u00a0primeiro passo \u00e9 identificar qual especialidade m\u00e9dica pode estar relacionada aos sintomas.<\/strong>\u00a0Por exemplo, se h\u00e1 manifesta\u00e7\u00f5es na pele, \u00e9 indicado procurar um dermatologista. Se os sintomas forem variados e n\u00e3o forem descobertos por outros profissionais, pode ser necess\u00e1rio procurar um geneticista ou neurologista.<\/p>\n<p>Rosely\u00a0Cizotti, diretora de comunica\u00e7\u00e3o do\u00a0Instituto Vidas Raras, detalha que, se n\u00e3o houver um especialista pr\u00f3ximo, uma alternativa \u00e9 consultar um cl\u00ednico geral, levando todos os exames e hist\u00f3rico m\u00e9dico. O m\u00e9dico pode avaliar e encaminhar para um especialista adequado, mas, muitas vezes, \u00e9 preciso insistir.<\/p>\n<blockquote><p>&#8220;Algumas pessoas desistem porque acham que est\u00e3o exagerando ou que v\u00e3o procurar pelo em ovo, mas esse esfor\u00e7o pode significar uma melhor qualidade de vida. \u00c9 poss\u00edvel viver bem com uma doen\u00e7a rara, e n\u00e3o apenas sobreviver.&#8221;<\/p><\/blockquote>\n<p>O podcast VideBula\u00a0pode ser ouvido no\u00a0<a href=\"https:\/\/agenciabrasil.ebc.com.br\/radioagencia-nacional\/saude\/audio\/2025-06\/videbula-conta-o-que-sao-doencas-raras-e-como-buscar-o-diagnostico\" target=\"_blank\" rel=\"noopener\">site da Radioag\u00eancia Nacional<\/a>\u00a0e em plataformas de \u00e1udio como o<\/p>\n<p>By: miradouronoticias.com.br\/ ag\u00eancia Brasil<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<p><\/main><\/p>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; Um podcast original da\u00a0Radioag\u00eancia Nacional, o\u00a0VideBula,\u00a0explica esta semana o que s\u00e3o doen\u00e7as\u00a0raras e orienta sobre os caminhos para o diagn\u00f3stico. Com um\u00a0epis\u00f3dio novo\u00a0todas as ter\u00e7as-feiras, o programa leva ao p\u00fablico informa\u00e7\u00e3o sobre sa\u00fade e direitos, de forma clara, acess\u00edvel e\u00a0livre de burocracia, sempre com os esclarecimentos de especialistas. As doen\u00e7as raras\u00a0s\u00e3o aquelas patologias que [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":28368,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,22],"tags":[],"class_list":["post-28367","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-destaque-principal","category-saude"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Podcast conta o que s\u00e3o doen\u00e7as raras e ajuda na busca do diagn\u00f3stico - Miradouro Not\u00edcias<\/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:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Podcast conta o que s\u00e3o doen\u00e7as raras e ajuda na busca do diagn\u00f3stico - Miradouro Not\u00edcias\" \/>\n<meta property=\"og:description\" content=\"&nbsp; Um podcast original da\u00a0Radioag\u00eancia Nacional, o\u00a0VideBula,\u00a0explica esta semana o que s\u00e3o doen\u00e7as\u00a0raras e orienta sobre os caminhos para o diagn\u00f3stico. Com um\u00a0epis\u00f3dio novo\u00a0todas as ter\u00e7as-feiras, o programa leva ao p\u00fablico informa\u00e7\u00e3o sobre sa\u00fade e direitos, de forma clara, acess\u00edvel e\u00a0livre de burocracia, sempre com os esclarecimentos de especialistas. As doen\u00e7as raras\u00a0s\u00e3o aquelas patologias que [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/\" \/>\n<meta property=\"og:site_name\" content=\"Miradouro Not\u00edcias\" \/>\n<meta property=\"article:published_time\" content=\"2025-06-05T20:06:47+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/miradouronoticias.com\/site\/wp-content\/uploads\/2025\/06\/banner_1170x700_25.webp\" \/>\n\t<meta property=\"og:image:width\" content=\"1170\" \/>\n\t<meta property=\"og:image:height\" content=\"700\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/webp\" \/>\n<meta name=\"author\" content=\"Cl\u00e1udia Olyver\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Cl\u00e1udia Olyver\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. tempo de leitura\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/\"},\"author\":{\"name\":\"Cl\u00e1udia Olyver\",\"@id\":\"https:\/\/miradouronoticias.com\/site\/#\/schema\/person\/73440d8c82222950df86f3e1a16aad3b\"},\"headline\":\"Podcast conta o que s\u00e3o doen\u00e7as raras e ajuda na busca do diagn\u00f3stico\",\"datePublished\":\"2025-06-05T20:06:47+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/\"},\"wordCount\":423,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\/\/miradouronoticias.com\/site\/#organization\"},\"image\":{\"@id\":\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/miradouronoticias.com\/site\/wp-content\/uploads\/2025\/06\/banner_1170x700_25.webp\",\"articleSection\":[\"Destaque Principal\",\"Sa\u00fade\"],\"inLanguage\":\"pt-BR\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/\",\"url\":\"https:\/\/miradouronoticias.com\/site\/2025\/06\/05\/podcast-conta-o-que-sao-doencas-raras-e-ajuda-na-busca-do-diagnostico\/\",\"name\":\"Podcast conta o que s\u00e3o doen\u00e7as raras e ajuda na busca do diagn\u00f3stico - 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