{"id":9205,"date":"2023-08-30T18:40:58","date_gmt":"2023-08-30T21:40:58","guid":{"rendered":"https:\/\/ocanal.com\/noticias\/corporativas\/comunicacao-pode-ser-aliada-na-causa-das-doencas-raras\/"},"modified":"2023-08-30T18:40:58","modified_gmt":"2023-08-30T21:40:58","slug":"comunicacao-pode-ser-aliada-na-causa-das-doencas-raras","status":"publish","type":"post","link":"https:\/\/ocanal.com\/noticias\/corporativas\/comunicacao-pode-ser-aliada-na-causa-das-doencas-raras\/","title":{"rendered":"Comunica\u00e7\u00e3o pode ser aliada na causa das doen\u00e7as raras"},"content":{"rendered":"<p>A comunica\u00e7\u00e3o emergiu como uma ferramenta poderosa para promover a conscientiza\u00e7\u00e3o e o engajamento no cen\u00e1rio de doen\u00e7as raras. Uma realidade que torna necess\u00e1ria a implementa\u00e7\u00e3o de estrat\u00e9gias e a colabora\u00e7\u00e3o entre os diferentes atores para enfrentar os desafios \u00fanicos que essas condi\u00e7\u00f5es representam. Diante desse cen\u00e1rio, a LLYC&nbsp;lan\u00e7a essa semana o novo informe<a rel=\"nofollow noopener\" target=\"_blank\" href=\"https:\/\/ideasbr.llorenteycuenca.com\/2023\/08\/24\/o-lobby-do-bem-como-a-comunicacao-e-decisiva-para-as-causas-de-doencas-raras\/\" data-mce-href=\"https:\/\/ideasbr.llorenteycuenca.com\/2023\/08\/24\/o-lobby-do-bem-como-a-comunicacao-e-decisiva-para-as-causas-de-doencas-raras\/\">&nbsp;\u201c<strong>O lobby do bem: como a comunica\u00e7\u00e3o \u00e9 decisiva para as causas de doen\u00e7as raras<\/strong>&#8220;.<\/a><\/p>\n<p>As doen\u00e7as raras n\u00e3o s\u00e3o t\u00e3o raras quando consideradas coletivamente. Elas afetam at\u00e9 350 milh\u00f5es de pessoas em todo o mundo, de acordo com a \u00faltima estimativa da <a rel=\"nofollow noopener\" target=\"_blank\" href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/index.php\" data-mce-href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/index.php\">Orphanet<\/a>. No entanto, a Am\u00e9rica Latina carece de pol\u00edticas p\u00fablicas relativas a esse tipo de condi\u00e7\u00e3o, conforme um estudo publicado em fevereiro de 2023 na revista brit\u00e2nica <a rel=\"nofollow noopener\" target=\"_blank\" href=\"https:\/\/www.thelancet.com\/journals\/eclinm\/article\/PIIS2589-5370(23)00118-9\/fulltext\" data-mce-href=\"https:\/\/www.thelancet.com\/journals\/eclinm\/article\/PIIS2589-5370(23)00118-9\/fulltext\">The Lancet<\/a>. Em pa\u00edses como Argentina, Brasil e Chile, as primeiras regulamenta\u00e7\u00f5es espec\u00edficas para atender pessoas com doen\u00e7as raras foram aprovadas entre 2011 e 2015.<\/p>\n<p>Nesse contexto, a comunica\u00e7\u00e3o se torna uma poderosa ferramenta para fortalecer o advocacy e avan\u00e7ar da demanda individual para a legitima\u00e7\u00e3o de uma causa coletiva, mobilizando agentes, recursos e poderes de decis\u00e3o para a transforma\u00e7\u00e3o da situa\u00e7\u00e3o. Al\u00e9m disso, \u00e9 essencial a colabora\u00e7\u00e3o cont\u00ednua entre organiza\u00e7\u00f5es de pacientes, legisladores, a ind\u00fastria farmac\u00eautica e outros atores para alcan\u00e7ar um impacto significativo na promo\u00e7\u00e3o de pol\u00edticas e recursos para essas condi\u00e7\u00f5es.&nbsp;<\/p>\n<p>Para<strong> Giuliana Gregori,<\/strong> Diretora de Healthcare e Advocacy na LLYC Brasil e uma das autoras do estudo: \u201cO desafio est\u00e1 em encontrar maneiras de tornar as vozes das pessoas afetadas pelas doen\u00e7as raras mais aud\u00edveis, transformando a conscientiza\u00e7\u00e3o em mobiliza\u00e7\u00e3o e, consequentemente, a\u00e7\u00f5es concretas que garantam aten\u00e7\u00e3o \u00e0 vida. Quando todos os agentes envolvidos se unem, n\u00e3o apenas lan\u00e7am luz sobre condi\u00e7\u00f5es negligenciadas, como constroem as bases para um futuro em que a compreens\u00e3o e a empatia prevale\u00e7am. Ao incorporar a comunica\u00e7\u00e3o como ferramenta de transforma\u00e7\u00e3o, estamos construindo uma ponte que liga a solidariedade \u00e0 mudan\u00e7a real\u201d.<\/p>\n<p>Nesse contexto,&nbsp; O lan\u00e7amento do estudo acontecer\u00e1 em parceria com a Casa Hunter no pr\u00f3ximo dia 01 de setembro, em S\u00e3o Paulo, e contar\u00e1 com a participa\u00e7\u00e3o de Antoine Daher, presidente da Casa Hunter e da Febrararas, Rosangela Wolff Moro, deputada federal pelo Uni\u00e3o Brasil, e Andr\u00e9a Gozetto, Especialista em Advocacy e Coordenadora Acad\u00eamica na Funda\u00e7\u00e3o Get\u00falio Vargas, al\u00e9m de Giuliana Gregori, diretora de Healthcare e Advocacy da LLYC Brasil, e Thyago Mathias, diretor-geral da consultoria no Brasil. As inscri\u00e7\u00f5es est\u00e3o abertas e podem ser feitas <a rel=\"nofollow noopener\" target=\"_blank\" href=\"https:\/\/llorenteycuenca-2673737.hs-sites.com\/pt-br\/evento-comunicacao-advocacy-doencas-raras?utm_campaign=SUR_EVENTOS&amp;utm_medium=email&amp;_hsmi=270671665&amp;_hsenc=p2ANqtz---CYknkCTU2nzREonreEg_L_j82_SYQsyPrf7uwyJLzQ98sHQp3AVh_dsmIFV-ATjklQkK8ixAmlHjuQPNne8QhCn7UMgUbH_RifbOslv78ThDbwM&amp;utm_content=270671665&amp;utm_source=hs_email\" data-mce-href=\"https:\/\/llorenteycuenca-2673737.hs-sites.com\/pt-br\/evento-comunicacao-advocacy-doencas-raras?utm_campaign=SUR_EVENTOS&amp;utm_medium=email&amp;_hsmi=270671665&amp;_hsenc=p2ANqtz---CYknkCTU2nzREonreEg_L_j82_SYQsyPrf7uwyJLzQ98sHQp3AVh_dsmIFV-ATjklQkK8ixAmlHjuQPNne8QhCn7UMgUbH_RifbOslv78ThDbwM&amp;utm_content=270671665&amp;utm_source=hs_email\" data-mce-selected=\"inline-boundary\">neste link<\/a>.&nbsp;<\/p>\n<p><img src='https:\/\/api.dino.com.br\/v2\/news\/tr\/292448?partnerId=3197' alt=\"\" style=\"border:0px;width:1px;height:1px;\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A comunica\u00e7\u00e3o emergiu como uma ferramenta poderosa para promover a conscientiza\u00e7\u00e3o e o engajamento no cen\u00e1rio de doen\u00e7as raras. Uma realidade que torna necess\u00e1ria a implementa\u00e7\u00e3o de estrat\u00e9gias e a colabora\u00e7\u00e3o entre os diferentes atores para enfrentar os desafios \u00fanicos que essas condi\u00e7\u00f5es representam. Diante desse cen\u00e1rio, a LLYC&nbsp;lan\u00e7a essa semana o novo informe&nbsp;\u201cO lobby [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":9206,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[],"class_list":["post-9205","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Comunica\u00e7\u00e3o pode ser aliada na causa das doen\u00e7as raras - Ocanal Not\u00edcias Corporativas - Empresariais, comunicados e neg\u00f3cios<\/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:\/\/ocanal.com\/noticias\/corporativas\/comunicacao-pode-ser-aliada-na-causa-das-doencas-raras\/\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Comunica\u00e7\u00e3o pode ser aliada na causa das doen\u00e7as raras - Ocanal Not\u00edcias Corporativas - Empresariais, comunicados e neg\u00f3cios\" \/>\n<meta property=\"og:description\" content=\"A comunica\u00e7\u00e3o emergiu como uma ferramenta poderosa para promover a conscientiza\u00e7\u00e3o e o engajamento no cen\u00e1rio de doen\u00e7as raras. 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