{"id":4930,"date":"2023-10-11T08:53:00","date_gmt":"2023-10-11T06:53:00","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/reveja-o-webinar-internacional-sobre-a-amiloidose-aa\/"},"modified":"2026-11-03T10:39:04","modified_gmt":"2026-11-03T09:39:04","slug":"reveja-o-webinar-internacional-sobre-a-amiloidose-aa","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/pt\/reveja-o-webinar-internacional-sobre-a-amiloidose-aa\/","title":{"rendered":"Reveja o webinar internacional sobre a amiloidose AA"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">No mundo das doen\u00e7as raras, cada conhecimento \u00e9 precioso. Doentes, cuidadores, investigadores e ativistas procuram constantemente compreender melhor o acesso dos tratamentos ao mercado, a comparticipa\u00e7\u00e3o e as regras complexas que enquadram as rela\u00e7\u00f5es entre a ind\u00fastria e as associa\u00e7\u00f5es de doentes com amiloidose. Perdeu o nosso \u00faltimo webinar? N\u00e3o se preocupe: a grava\u00e7\u00e3o em v\u00eddeo est\u00e1 dispon\u00edvel no YouTube.<\/p>\n\n<p class=\"wp-block-paragraph\">Dura\u00e7\u00e3o: duas sess\u00f5es + 30 minutos de perguntas e respostas<\/p>\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe loading=\"lazy\" title=\"International Webinar Amyloidosis AA\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/fchDUnbGczc?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n<div style=\"height:41px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<h3 class=\"wp-block-heading\"><strong>Sess\u00e3o 1: compreender melhor o acesso ao mercado e a comparticipa\u00e7\u00e3o dos tratamentos<\/strong><\/h3>\n\n<p class=\"wp-block-paragraph\"><br\/>Na primeira sess\u00e3o, os nossos especialistas exploraram em profundidade o labirinto do acesso ao mercado e da comparticipa\u00e7\u00e3o dos tratamentos da amiloidose AA. Apresent\u00e1mos estrat\u00e9gias para compreender e ultrapassar melhor as dificuldades que as pessoas, as fam\u00edlias e as associa\u00e7\u00f5es de doentes enfrentam muitas vezes. Entre os destaques:<\/p>\n\n<p class=\"wp-block-paragraph\">Os desafios do acesso ao mercado: a sess\u00e3o come\u00e7a com os obst\u00e1culos pr\u00f3prios dos tratamentos da amiloidose AA no mercado, incluindo o pre\u00e7o, o financiamento e a distribui\u00e7\u00e3o.<br\/>Estrat\u00e9gias de comparticipa\u00e7\u00e3o: os especialistas apresentam estrat\u00e9gias de comparticipa\u00e7\u00e3o eficazes, sublinhando a import\u00e2ncia da defesa dos doentes e das abordagens baseadas em dados.<br\/>Abordagens centradas no doente: descubra como colocar os doentes no centro das discuss\u00f5es sobre o acesso pode influenciar as pol\u00edticas e promover mudan\u00e7as positivas.<\/p>\n\n<h3 class=\"wp-block-heading\"><br\/>Sess\u00e3o 2: as regras e restri\u00e7\u00f5es que enquadram as rela\u00e7\u00f5es entre a ind\u00fastria e as associa\u00e7\u00f5es de doentes<\/h3>\n\n<p class=\"wp-block-paragraph\"><br\/>A segunda sess\u00e3o aborda o conjunto complexo de regras, exig\u00eancias \u00e9ticas e boas pr\u00e1ticas que enquadram as rela\u00e7\u00f5es entre a ind\u00fastria farmac\u00eautica e as associa\u00e7\u00f5es de doentes. Entre os destaques desta sess\u00e3o:<\/p>\n\n<p class=\"wp-block-paragraph\">Transpar\u00eancia e colabora\u00e7\u00e3o: como a ind\u00fastria e as associa\u00e7\u00f5es de doentes podem colaborar respeitando regras \u00e9ticas rigorosas e exig\u00eancias de transpar\u00eancia.<br\/>Enquadramento jur\u00eddico: compreender melhor o enquadramento jur\u00eddico que orienta as trocas e os acordos entre estes dois intervenientes essenciais.<br\/>Estudos de caso: exemplos reais de parcerias bem-sucedidas mostram as melhores formas de trabalhar em conjunto em benef\u00edcio dos doentes com doen\u00e7as raras.<\/p>\n\n<h3 class=\"wp-block-heading\"><br\/>30 minutos de perguntas e respostas<\/h3>\n\n<p class=\"wp-block-paragraph\"><br\/>Depois destas duas sess\u00f5es muito ricas, os nossos especialistas conversaram com um p\u00fablico muito participativo durante uma sess\u00e3o de perguntas e respostas de 30 minutos. Os participantes puderam colocar diretamente as suas perguntas aos oradores e obter respostas personalizadas.<\/p>\n\n<p class=\"wp-block-paragraph\"><br\/>A grava\u00e7\u00e3o deste webinar esclarecedor j\u00e1 est\u00e1 dispon\u00edvel no nosso canal de YouTube, para a ver quando lhe for mais conveniente. Seja doente, cuidador, ativista ou profissional de sa\u00fade, este webinar d\u00e1-lhe os conhecimentos e as ferramentas necess\u00e1rios para compreender o acesso dos tratamentos das doen\u00e7as raras ao mercado e as rela\u00e7\u00f5es entre a ind\u00fastria e as associa\u00e7\u00f5es de doentes.<\/p>\n\n<p class=\"wp-block-paragraph\">Junte-se a n\u00f3s no caminho para um futuro melhor para as comunidades da amiloidose. Veja hoje a grava\u00e7\u00e3o e ganhe meios para fazer a diferen\u00e7a na vida das pessoas afetadas por estas doen\u00e7as dif\u00edceis.<\/p>\n\n<p class=\"wp-block-paragraph\">Juntos, podemos promover a mudan\u00e7a e melhorar a vida dos doentes com amiloidose em todo o mundo. Mantenha-se informado, mantenha a capacidade de agir e mantenha-se em contacto com a Amyloidosis Alliance.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Grava\u00e7\u00e3o do webinar internacional sobre a amiloidose AA: acesso dos tratamentos ao mercado, comparticipa\u00e7\u00e3o e regras que enquadram as rela\u00e7\u00f5es entre a ind\u00fastria e as organiza\u00e7\u00f5es de doentes.<\/p>\n","protected":false},"author":1,"featured_media":4931,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[83],"tags":[],"class_list":["post-4930","post","type-post","status-publish","format-standard","has-post-thumbnail","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>Reveja o webinar internacional sobre a amiloidose AA<\/title>\n<meta name=\"description\" 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