{"id":2365,"date":"2020-03-17T00:00:00","date_gmt":"2020-03-17T00:00:00","guid":{"rendered":"http:\/\/centogene.vl22350.dinaserver.com\/2365"},"modified":"2020-03-17T00:00:00","modified_gmt":"2020-03-17T00:00:00","slug":"o-evento-centogene-omer-e-alibers-rare-disease-day-na-cidade-do-mexico-em-2020-trouxe-insights-inspiradores-sobre-as-contribuicoes-das-organizacoes-de-pacientes-para-solucoes-para-pacientes-na-america","status":"publish","type":"post","link":"https:\/\/www.centogene.com\/pt\/centogene-omer-and-alibers-rare-disease-day-event-in-mexico-city-2020-inspiring-insights-on-patient-organizations-contributions-to-solutions-for-patients-in-latin-america\/","title":{"rendered":"Evento do Dia das Doen\u00e7as Raras da CENTOGENE, OMER e ALIBER na Cidade do M\u00e9xico em 2020: Inspira\u00e7\u00e3o para as contribui\u00e7\u00f5es das organiza\u00e7\u00f5es de pacientes na busca de solu\u00e7\u00f5es para pacientes na Am\u00e9rica Latina."},"content":{"rendered":"<ul>\n<li>\n<ul>\n<li>Por ocasi\u00e3o do Dia Internacional das Doen\u00e7as Raras, em 29 de fevereiro, a Alian\u00e7a Ibero-americana para Doen\u00e7as Raras, \u00d3rf\u00e3s e Infecciosas (ALIBER), a Organiza\u00e7\u00e3o Mexicana para Doen\u00e7as Raras (OMER) e a CENTOGENE receberam pacientes e seus familiares, bem como defensores de pacientes e profissionais de sa\u00fade de toda a Am\u00e9rica Latina.<\/li>\n<\/ul>\n<ul>\n<li>Uma doen\u00e7a rara \u00e9 uma enfermidade que afeta menos de 5 em cada 10.000 pessoas. No geral, mais pessoas s\u00e3o afetadas por doen\u00e7as raras do que por c\u00e2ncer e HIV combinados.<\/li>\n<\/ul>\n<ul>\n<li>Estima-se que quase 8 milh\u00f5es de mexicanos sofram de uma doen\u00e7a rara, o que equivale a 51.040 pessoas da popula\u00e7\u00e3o.<\/li>\n<\/ul>\n<ul>\n<li>Existem cerca de 180 associa\u00e7\u00f5es ativas de pacientes com doen\u00e7as raras no M\u00e9xico.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p>Cidade do M\u00e9xico, 29 de fevereiro de 2020 \u2013 Mais de 300 participantes reuniram-se no s\u00e1bado no Hotel Marriott Reforma, na Cidade do M\u00e9xico, para conscientizar sobre doen\u00e7as raras no Dia Internacional das Doen\u00e7as Raras. Pacientes, familiares de pacientes, associa\u00e7\u00f5es internacionais de pacientes, cientistas, m\u00e9dicos especialistas e representantes do setor privado compartilharam experi\u00eancias e discutiram estudos, op\u00e7\u00f5es de diagn\u00f3stico, tratamentos e \u00e1reas de coopera\u00e7\u00e3o.<\/p>\n<p>O evento serviu como plataforma para discutir o papel das associa\u00e7\u00f5es de pacientes e suas valiosas contribui\u00e7\u00f5es para garantir que pacientes com doen\u00e7as raras tenham acesso a m\u00e9todos de diagn\u00f3stico precoces e adequados, bem como para debater o desenvolvimento de novas terapias e o potencial das m\u00eddias sociais e das novas tecnologias na \u00e1rea.<\/p>\n<p>\u201cAinda existe um atraso significativo no diagn\u00f3stico e no acesso a tratamentos espec\u00edficos para pacientes com doen\u00e7as raras. Em muitos casos, leva mais de 10 anos desde o in\u00edcio dos sintomas at\u00e9 um diagn\u00f3stico preciso. Isso pode causar danos irrevers\u00edveis e sequelas\u201d, afirmou o Prof. Dr. Atul Mehta, Chefe do Servi\u00e7o de Hematologia do Royal Free Hospital, em Londres. \u201cUm caminho importante para encurtar essa jornada diagn\u00f3stica \u00e9 expandir a triagem neonatal e incluir doen\u00e7as raras, em particular aquelas para as quais j\u00e1 existem tratamentos dispon\u00edveis. Como ferramenta diagn\u00f3stica de primeira linha, a triagem neonatal oferece uma oportunidade \u00fanica e extremamente valiosa para agirmos no melhor interesse de nossos pacientes\u201d, acrescentou o Dr. Juan In\u00e9s Navarrete, Chefe do Departamento de Gen\u00e9tica do Hospital Central del Sur de Alta Especialidad, na Cidade do M\u00e9xico.<\/p>\n<p>Representantes de associa\u00e7\u00f5es de pacientes do M\u00e9xico, Brasil, Peru, Equador e Espanha, bem como especialistas m\u00e9dicos e representantes das ind\u00fastrias biotecnol\u00f3gica e farmac\u00eautica, participaram de debates intensos e proveitosos sobre diversos temas de grande import\u00e2ncia. \u201cO pequeno n\u00famero de pacientes com doen\u00e7as raras com diagn\u00f3stico confirmado e sua dispers\u00e3o geogr\u00e1fica representam s\u00e9rios obst\u00e1culos aos estudos cl\u00ednicos. As associa\u00e7\u00f5es de pacientes podem desempenhar um papel importante na supera\u00e7\u00e3o desses obst\u00e1culos, ao se dedicarem \u00e0 cria\u00e7\u00e3o de registros nacionais de pacientes e facilitarem a coopera\u00e7\u00e3o com pesquisadores e a ind\u00fastria farmac\u00eautica em ensaios cl\u00ednicos e desenvolvimento de terapias\u201d, destacou Karla Luis de Castilla, diretora da ESPERANTRA, organiza\u00e7\u00e3o de pacientes do Peru.<\/p>\n<p>O papel das m\u00eddias sociais e das novas tecnologias na melhoria da assist\u00eancia m\u00e9dica e da qualidade de vida desses pacientes, incluindo a telemedicina e o uso de aplicativos em celulares, tamb\u00e9m foi discutido. \u201cO uso de aplicativos em celulares pelos pacientes representa um importante empoderamento no gerenciamento integral de muitas doen\u00e7as raras. Os pacientes podem gerenciar suas consultas, fornecer dados sobre sua qualidade de vida, monitorar sua pr\u00f3pria evolu\u00e7\u00e3o cl\u00ednica \u2014 tudo isso \u00e9 muito \u00fatil para a comunica\u00e7\u00e3o m\u00e9dico-paciente\u201d, enfatizou o Dr. Jordi P\u00e9rez L\u00f3pez, especialista em doen\u00e7as raras e chefe da Unidade de Liga\u00e7\u00e3o e Aconselhamento com Pacientes da CENTOGENE.<\/p>\n<p>\u201cO evento realmente destacou o papel das associa\u00e7\u00f5es de pacientes na melhoria do atendimento a pacientes com doen\u00e7as raras. Ao mesmo tempo, permitiu-nos ver o quanto ainda h\u00e1 por fazer. Pacientes, m\u00e9dicos, pesquisadores, legisladores e a ind\u00fastria farmac\u00eautica precisam unir esfor\u00e7os para alcan\u00e7ar os melhores resultados poss\u00edveis\u201d, concluiu o Dr. Jesus Navarro, presidente da OMER.<\/p>\n<p>O evento na Cidade do M\u00e9xico encerrou a iniciativa global do Dia das Doen\u00e7as Raras 2020 da CENTOGENE, que come\u00e7ou em Lahore, no Paquist\u00e3o, e continuou em Berlim, na Alemanha, antes de terminar na Am\u00e9rica Latina.<\/p>\n<p>Mais informa\u00e7\u00f5es podem <a href=\"http:\/\/www.rdd2020.eu\" target=\"_blank\" title=\"Mais informa\u00e7\u00f5es\">pode ser encontrado online.<\/a><\/p>\n<h5>Contato com a m\u00eddia:<\/h5>\n<p>CENTOGENE<br \/> <a href=\"mailto:press@centogene.com\" title=\"Escreva um e-mail\">press(at)centogene(dot)com<\/a><\/p>\n<p>ALIBER<br \/> <a href=\"mailto:aliber@aliber.org\" target=\"_blank\" title=\"Escreva um e-mail\">aliber(at)aliber(dot)org<\/a><\/p>\n<p>\u00d4MERO<br \/> <a href=\"mailto:omer.proyectos@gmail.com\" title=\"Escreva um e-mail\">omer.proyectos(at)gmail(ponto)com<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>On the occasion of International Rare Disease Day on February 29th, the Iberoamerican Alliance for Rare, Orphan, and Infectious Diseases [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-2365","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>CENTOGENE, OMER, and ALIBER\u2019s Rare Disease Day Event in Mexico City 2020: Inspiring Insights on Patient Organizations\u2019 Contributions to Solutions for Patients in 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