{"id":4896,"date":"2024-02-20T08:34:00","date_gmt":"2024-02-20T07:34:00","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/o-dia-das-doencas-raras-2024-esta-a-chegar\/"},"modified":"2026-11-03T10:39:00","modified_gmt":"2026-11-03T09:39:00","slug":"o-dia-das-doencas-raras-2024-esta-a-chegar","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/pt\/o-dia-das-doencas-raras-2024-esta-a-chegar\/","title":{"rendered":"O Dia das Doen\u00e7as Raras 2024 est\u00e1 a chegar!"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">O dia 29 de fevereiro assinala o Dia Mundial das Doen\u00e7as Raras, uma ocasi\u00e3o especial para sensibilizar o p\u00fablico para as dificuldades das pessoas que vivem com uma doen\u00e7a rara. Este ano, a Amyloidosis Alliance volta a mobilizar-se em todo o mundo para apoiar a causa e mostrar o impacto da amiloidose. Cada <a href=\"https:\/\/www.amyloidosisalliance.org\/pt\/membros\/\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-pale-cyan-blue-color\">membro<\/mark><\/a> da Alian\u00e7a contribui \u00e0 sua maneira, no seu pa\u00eds.<\/p>\n\n<p class=\"wp-block-paragraph\"><a href=\"http:\/\/rarediseaseday.org\/\">D<\/a><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-pale-cyan-blue-color\"><a href=\"http:\/\/rarediseaseday.org\/\">ia Internacional das Doen\u00e7as Raras:<\/a> <\/mark>um evento incontorn\u00e1vel celebrado todos os anos, simbolicamente a 29 de fevereiro nos anos bissextos. Este dia oferece uma plataforma essencial para sensibilizar o p\u00fablico, incentivar a investiga\u00e7\u00e3o e promover o acesso ao tratamento para as pessoas que vivem com doen\u00e7as raras.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-luminous-vivid-orange-color\">A Amyloidosis Alliance, um ator empenhado no Dia das Doen\u00e7as Raras<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">Por ocasi\u00e3o deste dia excecional, a Amyloidosis Alliance afirma-se como um ator empenhado na luta contra as doen\u00e7as raras. A amiloidose \u00e9 uma doen\u00e7a caracterizada pela deposi\u00e7\u00e3o an\u00f3mala de prote\u00ednas nos tecidos e \u00f3rg\u00e3os, que provoca complica\u00e7\u00f5es graves. Infelizmente, devido \u00e0 sua raridade, a amiloidose \u00e9 muitas vezes mal diagnosticada, o que atrasa um tratamento adequado.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-vivid-cyan-blue-color\">Sensibilizar e mobilizar: os objetivos da Amyloidosis Alliance para o Dia das Doen\u00e7as Raras<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">A Amyloidosis Alliance vai aproveitar este dia para intensificar as suas a\u00e7\u00f5es de sensibiliza\u00e7\u00e3o, destacando as dificuldades enfrentadas pelos doentes com amiloidose. A associa\u00e7\u00e3o pretende tamb\u00e9m mobilizar recursos para apoiar a investiga\u00e7\u00e3o, de modo a compreender melhor a doen\u00e7a e desenvolver tratamentos mais eficazes.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-vivid-green-cyan-color\">Como participar no Dia das Doen\u00e7as Raras<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">Pode associar-se ao compromisso da Alian\u00e7a participando ativamente no Dia das Doen\u00e7as Raras. Siga as redes sociais da Alian\u00e7a, partilhe informa\u00e7\u00f5es \u00fateis e utilize a hashtag oficial do dia para dar mais alcance \u00e0s mensagens de sensibiliza\u00e7\u00e3o. Pode tamb\u00e9m apoiar as a\u00e7\u00f5es, a investiga\u00e7\u00e3o e as iniciativas de cada um dos membros da Alian\u00e7a em todo o mundo.<\/p>\n\n<h2 class=\"wp-block-heading has-medium-font-size\"><mark style=\"background-color:rgba(0, 0, 0, 0)\" class=\"has-inline-color has-pale-pink-color\">Fazer a diferen\u00e7a juntos<\/mark><\/h2>\n\n<p class=\"wp-block-paragraph\">O Dia Internacional das Doen\u00e7as Raras \u00e9 uma oportunidade preciosa para dar a conhecer ao p\u00fablico realidades muitas vezes pouco conhecidas. Unindo for\u00e7as com a Amyloidosis Alliance, cada um de n\u00f3s pode ajudar a fazer avan\u00e7ar a investiga\u00e7\u00e3o, a melhorar os cuidados aos doentes e a promover a causa das doen\u00e7as raras. <\/p>\n\n<p class=\"wp-block-paragraph\">No dia 29 de fevereiro, junte-se a esta iniciativa mundial e seja a voz de quem luta contra a amiloidose.<\/p>\n\n<div style=\"height:49px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-image size-full is-resized\"><img decoding=\"async\" src=\"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2022\/06\/cropped-cropped-logo.jpg\" alt=\"\" class=\"wp-image-5208\" style=\"width:218px;height:auto\"\/><\/figure>\n\n<div style=\"height:100px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n","protected":false},"excerpt":{"rendered":"<p>O Dia das Doen\u00e7as Raras realiza-se a 29 de fevereiro de 2024. Como a Amyloidosis Alliance e os seus membros se mobilizam para dar visibilidade \u00e0 amiloidose entre as doen\u00e7as raras.<\/p>\n","protected":false},"author":1,"featured_media":4897,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[83],"tags":[],"class_list":["post-4896","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>O Dia das Doen\u00e7as Raras 2024 est\u00e1 a chegar!<\/title>\n<meta name=\"description\" content=\"O Dia das Doen\u00e7as Raras realiza-se a 29 de fevereiro de 2024. 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