{"id":20883,"date":"2023-02-28T11:16:50","date_gmt":"2023-02-28T14:16:50","guid":{"rendered":"https:\/\/www.fatosefotosnews.com.br\/rio-dia-mundial-de-doencas-raras-tem-iluminacao-em-pontos-turisticos\/"},"modified":"2023-02-28T11:16:50","modified_gmt":"2023-02-28T14:16:50","slug":"rio-dia-mundial-de-doencas-raras-tem-iluminacao-em-pontos-turisticos","status":"publish","type":"post","link":"https:\/\/www.fatosefotosnews.com.br\/?p=20883","title":{"rendered":"Rio: Dia Mundial de Doen\u00e7as Raras tem ilumina\u00e7\u00e3o em pontos tur\u00edsticos"},"content":{"rendered":"<div class=\"post-item-wrap\">\n<p>O carioca que olhar para o Cristo Redentor nesta ter\u00e7a-feira (28)\u00a0o ver\u00e1 iluminado com as cores rosa, verde e azul\u00a0em fun\u00e7\u00e3o do Dia Mundial das doen\u00e7as Raras. As\u00a0cores foram escolhidas por ser\u00a0um s\u00edmbolo dessas doen\u00e7as.<img decoding=\"async\" src=\"https:\/\/agenciabrasil.ebc.com.br\/ebc.png?id=1513154&#038;o=node\" style=\"width:1px;height:1px\"><img decoding=\"async\" src=\"https:\/\/agenciabrasil.ebc.com.br\/ebc.gif?id=1513154&#038;o=node\" style=\"width:1px;height:1px\"><\/p>\n<p>Outros pontos da cidade, como os pal\u00e1cios Tiradentes e Guanabara, tamb\u00e9m ser\u00e3o iluminados. Em outro evento para marcar a data, a Universidade do Estado do Rio\u00a0de Janeiro\u00a0(Uerj) promover\u00e1\u00a0palestra sobre doen\u00e7as raras \u00e0s 11h, no centro de estudos PPC\/Uerj. Fechando a semana, a Roda Gigante do Rio ser\u00e1 iluminada\u00a0no\u00a0s\u00e1bado (4)\u00a0em homenagem aos doentes raros.<\/p>\n<p>A homenagem, que visa a conscientizar a sociedade para a causa das doen\u00e7as raras, \u00e9 uma iniciativa da presidente da Associa\u00e7\u00e3o Brasileira de Narcolepsia &#038; Hipersonia Idiop\u00e1tica, Ana Braga. Ela coordena ainda\u00a0a Equipe Raras, um grupo de mulheres que lutam por pol\u00edticas p\u00fablicas para essa\u00a0popula\u00e7\u00e3o no Rio.<\/p>\n<p>&#8220;Esses eventos s\u00e3o importantes para que os raros entendam que n\u00e3o est\u00e3o sozinhos. As doen\u00e7as podem ser raras, mas juntos somos muitos. Precisamos falar da import\u00e2ncia do diagn\u00f3stico precoce, do acolhimento e da luta por direitos pelas pessoas com doen\u00e7as raras&#8221;, diz.<\/p>\n<p>O dia oficial das Doen\u00e7as Raras \u00e9\u00a029 de fevereiro, por isso\u00a0ocorre apenas uma vez a cada quatro anos. Neste ano, por n\u00e3o ser bissexto, a comemora\u00e7\u00e3o se deu\u00a0ao longo do m\u00eas\u00a0de fevereiro, com \u00e1pice neste\u00a0dia 28.<\/p>\n<h2>Raros<\/h2>\n<p>Considera-se doen\u00e7a rara aquela que afeta at\u00e9 65 pessoas em cada 100 mil\u00a0indiv\u00edduos. O n\u00famero exato de doen\u00e7as raras n\u00e3o \u00e9 conhecido. Estima-se que existam entre 6 mil\u00a0e\u00a08 mil\u00a0tipos diferentes em todo o mundo.<\/p>\n<p>Dados da organiza\u00e7\u00e3o n\u00e3o governamental\u00a0Eurodis (Rare Diseases Europe) mostram que 73% das doen\u00e7as raras decorrem de fatores gen\u00e9ticos, sendo que as demais adv\u00eam de causas ambientais, infecciosas, imunol\u00f3gicas, entre outras. Muito embora sejam individualmente raras, como grupo elas acometem percentual significativo da popula\u00e7\u00e3o, o que resulta em problema de sa\u00fade relevante.<\/p>\n<p>As doen\u00e7as raras s\u00e3o caracterizadas por ampla diversidade de sinais e sintomas, que variam n\u00e3o s\u00f3 de doen\u00e7a para doen\u00e7a\u00a0mas de pessoa para pessoa acometida pela mesma condi\u00e7\u00e3o. Manifesta\u00e7\u00f5es relativamente frequentes podem simular doen\u00e7as comuns, dificultando o diagn\u00f3stico, causando elevado sofrimento cl\u00ednico e psicossocial aos afetados, bem como \u00e0s\u00a0suas fam\u00edlias. O\u00a0diagn\u00f3stico precoce e o\u00a0acesso ao tratamento asseguram\u00a0melhor qualidade de vida dos pacientes.<\/p>\n<p>Se voc\u00ea ou algu\u00e9m que voc\u00ea conhe\u00e7a tem\u00a0sintomas persistentes, sem causa aparente ou sem rela\u00e7\u00e3o entre eles, considere a possibilidade de\u00a0uma doen\u00e7a rara. No Rio, procure uma cl\u00ednica da fam\u00edlia e pe\u00e7a para ser encaminhado pelo Sisreg ao Ambulat\u00f3rio de Doen\u00e7as Raras no Hospital Universit\u00e1rio Pedro Ernesto (Hupe).<\/p>\n<p>Em caso de qualquer suspeita, nunca se automedique ou tire conclus\u00f5es precipitadas. Conte com a ajuda de grupos de apoio. O Instituto Vidas Raras disponibiliza o telefone\u00a00800 006 7868\u00a0para ajudar com orienta\u00e7\u00f5es e a busca desses grupos.<\/p>\n<p>Confira o podcast <a href=\"https:\/\/agenciabrasil.ebc.com.br\/radioagencia-nacional\/direitos-humanos\/audio\/2023-02\/dia-doencas-raras-episodio-3%C2%A0\" target=\"_blank\" rel=\"noopener\">Hist\u00f3rias Raras<\/a>, em tr\u00eas epis\u00f3dios, produzido pela Radioag\u00eancia sobre o tema.<\/p>\n<\/p>\n<\/div>\n<p class=\"alt-font font-italic my-2 small text-info\">                                                 Edi\u00e7\u00e3o:   Gra\u00e7a Adjuto                    <\/p>\n<p id=\"infocoweb_fonte\" class=\"infocoweb_fonte\">Fonte: <a target=\"_blank\" href=\"http:\/\/agenciabrasil.ebc.com.br\/saude\/noticia\/2023-02\/rio-dia-mundial-de-doencas-raras-tem-iluminacao-em-pontos-turisticos#88bd1b98-21ba-47d9-8790-d3f222553f75\" rel=\"noopener\">EBC Sa\u00fade<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>O carioca que olhar para o Cristo Redentor nesta ter\u00e7a-feira (28)\u00a0o ver\u00e1 iluminado com as cores rosa, verde e azul\u00a0em fun\u00e7\u00e3o do Dia Mundial das doen\u00e7as Raras. As\u00a0cores foram escolhidas por ser\u00a0um s\u00edmbolo dessas doen\u00e7as. Outros pontos da cidade, como os pal\u00e1cios Tiradentes e Guanabara, tamb\u00e9m ser\u00e3o iluminados. Em outro evento para marcar a data, [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":20884,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_angie_page":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_themeisle_gutenberg_block_has_review":false,"page_builder":"","footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[167],"tags":[2772,424,1312,2720,2773],"class_list":["post-20883","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-geral","tag-ilumina","tag-mundial","tag-pontos","tag-raras","tag-turisticos"],"acf":[],"nelio_content":{"autoShareEndMode":"never","automationSources":{"useCustomSentences":false,"customSentences":[]},"efiAlt":"","efiUrl":"","followers":[],"highlights":[],"isAutoShareEnabled":true,"networkImageIds":[],"permalinkQueryArgs":[],"series":[],"suggestedReferences":[]},"yoast_head":"<!-- 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