{"id":4970,"date":"2023-06-06T07:41:00","date_gmt":"2023-06-06T05:41:00","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/o-forum-da-whf-na-suica\/"},"modified":"2026-11-03T10:41:32","modified_gmt":"2026-11-03T09:41:32","slug":"o-forum-da-whf-na-suica","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/pt\/o-forum-da-whf-na-suica\/","title":{"rendered":"O f\u00f3rum da WHF na Su\u00ed\u00e7a"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">A World Heart Federation (WHF) organizou a 17 e 18 de maio de 2023, em Genebra (Su\u00ed\u00e7a), um f\u00f3rum especial intitulado \u00abSHINING A LIGHT ON RARE CARDIOVASCULAR DISEASES\u00bb (Dar visibilidade \u00e0s doen\u00e7as cardiovasculares raras), antes do World Heart Summit 2023, realizado de 19 a 21 de maio. Representantes de doentes com experi\u00eancia vivida de quatro doen\u00e7as cardiovasculares raras foram convidados a trazer a perspetiva dos doentes e a dar voz \u00e0 defini\u00e7\u00e3o das estrat\u00e9gias da WHF para o diagn\u00f3stico e o tratamento destas doen\u00e7as raras:<\/p>\n\n<h2 class=\"wp-block-heading\">O painel reuniu representantes de doentes das quatro doen\u00e7as cardiovasculares raras seguintes:\u00a0<\/h2>\n\n<div class=\"wp-block-group is-vertical is-layout-flex wp-container-core-group-is-layout-1bbac977 wp-block-group-is-layout-flex\">\n<ul class=\"wp-block-list\">\n<li>hipertens\u00e3o arterial pulmonar (HAP),\u00a0<\/li>\n\n\n\n<li>hipercolesterolemia familiar homozig\u00f3tica (HFHo)\u00a0<\/li>\n\n\n\n<li>miocardiopatia amiloide por transtirretina (ATTR-CM)\u00a0<\/li>\n\n\n\n<li>miocardiopatia hipertr\u00f3fica heredit\u00e1ria\u00a0<\/li>\n<\/ul>\n<\/div>\n\n<p class=\"wp-block-paragraph\">O f\u00f3rum abriu com as palavras do Dr. Daniel Pi\u00f1eiro, presidente da WHF, que lembrou que: \u00a0<\/p>\n\n<ul class=\"wp-block-list\">\n<li>A sa\u00fade \u00e9 um direito humano, e todos os doentes merecem uma vida mais longa e uma melhor qualidade de vida.<\/li>\n\n\n\n<li>A voz dos pr\u00f3prios doentes vale mais do que a dos m\u00e9dicos que falam em seu nome.\u00a0<\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">M\u00e9dicos especialistas de cada uma das quatro doen\u00e7as raras fizeram uma apresenta\u00e7\u00e3o ao grupo. A Dra. Nikki Bart, da Universidade de Nova Gales do Sul (Austr\u00e1lia), participou no f\u00f3rum \u00e0 dist\u00e2ncia para abordar os principais desafios que os doentes com ATTR-CM enfrentam. A Dra. Bart destacou v\u00e1rios pontos-chave do diagn\u00f3stico e do acompanhamento da ATTR-CM, incluindo os atrasos no diagn\u00f3stico e no acesso ao tratamento.\u00a0<\/p>\n\n<p class=\"wp-block-paragraph\">Keith Dares, do Canad\u00e1, membro da Amyloidosis Alliance, \u00e9 um doente que vive com ATTR-CM. Keith teve o prazer de participar no f\u00f3rum para partilhar o seu percurso at\u00e9 ao diagn\u00f3stico e a forma como viver com ATTR-CM afeta as suas atividades di\u00e1rias. As sess\u00f5es de trabalho em grupo deram origem a muitos debates, que permitiram identificar \u00e1reas a melhorar:\u00a0<\/p>\n\n<h2 class=\"wp-block-heading\">O que \u00e9 preciso para encurtar o tempo at\u00e9 um diagn\u00f3stico correto?\u00a0<\/h2>\n\n<p class=\"wp-block-paragraph\">Como preparar melhor os m\u00e9dicos de medicina geral e familiar para evitar diagn\u00f3sticos falhados ou errados: ser\u00e1 poss\u00edvel incentivar a \u00abexclus\u00e3o\u00bb da amiloidose mais cedo, e n\u00e3o mais tarde, nos protocolos de diagn\u00f3stico? Ser\u00e1 poss\u00edvel criar uma ferramenta que assinale as situa\u00e7\u00f5es de alerta, para um diagn\u00f3stico mais precoce?\u00a0<\/p>\n\n<div class=\"wp-block-group is-vertical is-layout-flex wp-container-core-group-is-layout-1bbac977 wp-block-group-is-layout-flex\">\n<p class=\"wp-block-paragraph\">Como combater a desigualdade de diagn\u00f3stico nas mulheres?<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Que modelos existem para os \u00abcentros de excel\u00eancia\u00bb? Como conseguir um melhor acesso a melhores cuidados?\u00a0<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Como reduzir os obst\u00e1culos para melhorar o acesso \u00e0s terap\u00eauticas?\u00a0<\/p>\n<\/div>\n\n<p class=\"wp-block-paragraph\">Quando as conclus\u00f5es finais foram apresentadas no segundo dia, foi interessante ver os desafios comuns \u00e0s quatro comunidades de doentes. Igualmente interessante foi o potencial, atualmente em estudo, da intelig\u00eancia artificial e da aprendizagem autom\u00e1tica para ajudar a encurtar os prazos de diagn\u00f3stico. <\/p>\n\n<p class=\"wp-block-paragraph\">O objetivo da World Heart Federation \u00e9 usar as informa\u00e7\u00f5es partilhadas pelos doentes para elaborar um plano de trabalho que responda \u00e0s dificuldades do diagn\u00f3stico, do tratamento e do acompanhamento das pessoas que vivem com doen\u00e7as cardiovasculares raras.<\/p>\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" src=\"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2023\/06\/10.png\" alt=\"\" class=\"wp-image-6805\"\/><\/figure>\n\n<div style=\"height:40px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" src=\"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2023\/06\/11.png\" alt=\"\" class=\"wp-image-6806\"\/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Num f\u00f3rum da World Heart Federation em Genebra, em maio de 2023, representantes de doentes, incluindo da miocardiopatia ATTR, falaram sobre as doen\u00e7as card\u00edacas raras.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[83],"tags":[],"class_list":["post-4970","post","type-post","status-publish","format-standard","hentry","category-uncategorized-pt-pt"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>O f\u00f3rum da WHF na Su\u00ed\u00e7a<\/title>\n<meta name=\"description\" content=\"Num f\u00f3rum da World Heart Federation em Genebra, em maio de 2023, representantes de doentes, incluindo da miocardiopatia ATTR, falaram sobre as doen\u00e7as card\u00edacas 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