{"id":24158,"date":"2013-02-26T13:41:16","date_gmt":"2013-02-26T16:41:16","guid":{"rendered":"http:\/\/www.inclusive.org.br\/?p=24158"},"modified":"2013-02-26T13:41:16","modified_gmt":"2013-02-26T16:41:16","slug":"seminario-marca-o-dia-mundial-das-doencas-raras","status":"publish","type":"post","link":"https:\/\/inclusivenews.com.br\/?p=24158","title":{"rendered":"Semin\u00e1rio marca o Dia Mundial das Doen\u00e7as Raras"},"content":{"rendered":"<figure style=\"width: 142px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" title=\"Semin\u00e1rio Dia Mundial das Doen\u00e7as Raras\" src=\"http:\/\/www.ensp.fiocruz.br\/portal-ensp\/informe\/site\/arquivos\/ckeditor\/images\/doencas_raras_capa_esq_2013.jpg\" alt=\"Semin\u00e1rio Dia Mundial das Doen\u00e7as Raras\" width=\"142\" height=\"113\" \/><figcaption class=\"wp-caption-text\"> <\/figcaption><\/figure>\n<p>A C\u00e2mara dos Deputados promover\u00e1 o\u00a0semin\u00e1rio O Dia Mundial das Doen\u00e7as Raras,\u00a0no dia 27 de fevereiro, das 14 \u00e0s 18 horas. O objetivo do evento \u00e9 chamar a aten\u00e7\u00e3o das autoridades e da sociedade para o conhecimento dessas doen\u00e7as, que, em sua maioria, s\u00e3o graves, incur\u00e1veis, cr\u00f4nicas, frequentemente degenerativas e progressivas, al\u00e9m de constitu\u00edrem risco de morte. O Dia Mundial das Doen\u00e7as Raras \u00e9 celebrado em 29 de fevereiro.<\/p>\n<p>Estar\u00e3o presentes no\u00a0evento, que ser\u00e1 realizado na C\u00e2mara dos Deputados, em Bras\u00edlia,\u00a0o ministro da Sa\u00fade, Alexandre Padilha,\u00a0parlamentares, especialistas da \u00e1rea m\u00e9dica, representantes de entidades ligadas ao assunto e portadores dessas enfermidades.<\/p>\n<p>Esta ser\u00e1 a segunda edi\u00e7\u00e3o do evento, que, em 2012, motivou o Minist\u00e9rio da Sa\u00fade a criar\u00a0o Grupo de Trabalho sobre Doen\u00e7as Raras. Para o diretor da Associa\u00e7\u00e3o Maria Vit\u00f3ria (Amavi), Rog\u00e9rio Lima, o ministro Alexandre Padilha ter\u00e1 a oportunidade de expor quais s\u00e3o os avan\u00e7os do grupo. Entre outras a\u00e7\u00f5es, a Amavi defende, na esfera do poder p\u00fablico,\u00a0o direito dos portadores de doen\u00e7as raras.<\/p>\n<p>O Minist\u00e9rio da Sa\u00fade classifica como doen\u00e7as raras aquelas que afetam, no m\u00e1ximo,\u00a01 em 2 mil pessoas. Cerca de 80% dessas doen\u00e7as t\u00eam origem gen\u00e9tica, e muitas ainda n\u00e3o possuem cura conhecida. Estima-se que de 6% a 8% da popula\u00e7\u00e3o mundial seja atingida por esse grupo de doen\u00e7as que, na maioria das vezes, manifestam sintomas cr\u00f4nicos e\u00a0degenerativos e t\u00eam elevado risco de morte.<\/p>\n<p>Fonte: Fiocruz<\/p>\n","protected":false},"excerpt":{"rendered":"<p>O Minist\u00e9rio da Sa\u00fade classifica como doen\u00e7as raras aquelas que afetam, no m\u00e1ximo, 1 em 2 mil pessoas. Cerca de 80% dessas doen\u00e7as t\u00eam origem gen\u00e9tica, e muitas ainda n\u00e3o possuem cura conhecida. Estima-se que de 6% a 8% da popula\u00e7\u00e3o mundial seja atingida por esse grupo de doen\u00e7as que, na maioria das vezes, manifestam sintomas cr\u00f4nicos e degenerativos e t\u00eam elevado risco de morte. Da Fiocruz.<\/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-24158","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Semin\u00e1rio marca o Dia Mundial das Doen\u00e7as Raras -<\/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=24158\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Semin\u00e1rio marca o Dia Mundial das Doen\u00e7as Raras -\" \/>\n<meta property=\"og:description\" content=\"O Minist\u00e9rio da Sa\u00fade classifica como doen\u00e7as raras aquelas que afetam, no m\u00e1ximo, 1 em 2 mil pessoas. 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