{"id":5702,"date":"2022-12-30T16:01:34","date_gmt":"2022-12-30T16:01:34","guid":{"rendered":"https:\/\/p-bio.org\/noticias\/medicamentos-orfaos-e-a-realidade-portuguesa-joaquim-marques\/"},"modified":"2023-05-09T01:54:33","modified_gmt":"2023-05-09T01:54:33","slug":"medicamentos-orfaos-e-a-realidade-portuguesa-joaquim-marques","status":"publish","type":"noticias","link":"https:\/\/p-bio.org\/en\/news\/medicamentos-orfaos-e-a-realidade-portuguesa-joaquim-marques\/","title":{"rendered":"Orphan drugs and the Portuguese reality"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"5702\" class=\"elementor elementor-5702 elementor-4197\" data-elementor-post-type=\"noticias\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-38497c2 elementor-section-boxed elementor-section-height-default elementor-section-height-default row-top\" data-id=\"38497c2\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-d14e107 column-style-top\" data-id=\"d14e107\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3ef6e3a elementor-widget elementor-widget-text-editor\" data-id=\"3ef6e3a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>As doen\u00e7as raras s\u00e3o definidas por uma preval\u00eancia inferior a cinco em cada 10.000 pessoas e as doen\u00e7as ultra-raras definem-se como uma patologia com uma preval\u00eancia inferior a um doente por 100.000 pessoas. Neste sentido, torna-se bastante desafiante recrutar volunt\u00e1rios em n\u00famero suficiente para um ensaio cl\u00ednico que fa\u00e7a a comprova\u00e7\u00e3o de um novo medicamento, de modo evidente e sustent\u00e1vel. Por\u00e9m, embora seja expect\u00e1vel que os crit\u00e9rios de avalia\u00e7\u00e3o beneficiem de uma diferencia\u00e7\u00e3o entre medicamentos \u00f3rf\u00e3os e n\u00e3o \u00f3rf\u00e3os, a verdade \u00e9 que esta \u00e9 apenas uma realidade em alguns pa\u00edses europeus, mas n\u00e3o em Portugal.<\/p><p>Leia mais sobre o tema neste artigo de opini\u00e3o de Joaquim Marques &#8211; Coordenador do Grupo de Trabalho das Doen\u00e7as Raras da P-BIO.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-0946e63 elementor-section-boxed elementor-section-height-default elementor-section-height-default row-top\" data-id=\"0946e63\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-0fde4f4 column-style-top\" data-id=\"0fde4f4\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-5116b4a elementor-widget elementor-widget-text-editor\" data-id=\"5116b4a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span style=\"text-decoration: underline;\"><em><strong><a href=\"http:\/\/www.publico.pt\/2022\/12\/30\/opiniao\/opiniao\/medicamentos-orfaos-realidade-portuguesa-2033210\">Medicamentos \u00f3rf\u00e3os e a realidade portuguesa<\/a><\/strong><\/em><\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Rare diseases are defined as a prevalence of less than five in every 10,000 people and ultra-rare diseases are defined as a condition with a prevalence of less than one [&hellip;]<\/p>\n","protected":false},"featured_media":0,"template":"","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"footnotes":""},"categoria":[],"class_list":["post-5702","noticias","type-noticias","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/p-bio.org\/en\/wp-json\/wp\/v2\/noticias\/5702","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/p-bio.org\/en\/wp-json\/wp\/v2\/noticias"}],"about":[{"href":"https:\/\/p-bio.org\/en\/wp-json\/wp\/v2\/types\/noticias"}],"version-history":[{"count":3,"href":"https:\/\/p-bio.org\/en\/wp-json\/wp\/v2\/noticias\/5702\/revisions"}],"predecessor-version":[{"id":7302,"href":"https:\/\/p-bio.org\/en\/wp-json\/wp\/v2\/noticias\/5702\/revisions\/7302"}],"wp:attachment":[{"href":"https:\/\/p-bio.org\/en\/wp-json\/wp\/v2\/media?parent=5702"}],"wp:term":[{"taxonomy":"categoria","embeddable":true,"href":"https:\/\/p-bio.org\/en\/wp-json\/wp\/v2\/categoria?post=5702"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}