{"id":2367,"date":"2020-03-17T00:00:00","date_gmt":"2020-03-17T00:00:00","guid":{"rendered":"http:\/\/centogene.vl22350.dinaserver.com\/2367"},"modified":"2020-03-17T00:00:00","modified_gmt":"2020-03-17T00:00:00","slug":"associacoes-de-doencas-raras-lutam-por-melhores-cuidados-de-saude-para-os-pacientes","status":"publish","type":"post","link":"https:\/\/www.centogene.com\/pt\/rare-disease-associations-fight-for-better-patient-health-care\/","title":{"rendered":"Associa\u00e7\u00f5es de Doen\u00e7as Raras Lutam por Melhores Cuidados de Sa\u00fade para os Pacientes"},"content":{"rendered":"<ul>\n<li>\n<ul>\n<li>No s\u00e1bado, 29 de fevereiro, a CENTOGENE, a OMER e a ALIBER celebrar\u00e3o o Dia Internacional das Doen\u00e7as Raras com um evento para pacientes, profissionais de sa\u00fade e defensores da causa, com o objetivo de dar visibilidade \u00e0s doen\u00e7as raras.<\/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, 28 de fevereiro de 2020: Mais de 300 participantes se reunir\u00e3o em 29 de fevereiro de 2020 no Hotel Marriott Reforma, na Cidade do M\u00e9xico, para conscientizar e fortalecer a comunidade em torno de todos os afetados por doen\u00e7as raras. Pacientes, familiares, associa\u00e7\u00f5es de pacientes, cientistas e especialistas m\u00e9dicos compartilhar\u00e3o suas experi\u00eancias e discutir\u00e3o os estudos mais recentes, op\u00e7\u00f5es de diagn\u00f3stico, tratamentos e \u00e1reas de coopera\u00e7\u00e3o.<\/p>\n<p>\u201cA import\u00e2ncia das associa\u00e7\u00f5es de pacientes com doen\u00e7as raras n\u00e3o pode ser subestimada. Elas n\u00e3o s\u00f3 dedicam esfor\u00e7os valiosos para dar maior visibilidade a essas doen\u00e7as e aos problemas enfrentados pelas pessoas afetadas, como tamb\u00e9m est\u00e3o profundamente envolvidas na cria\u00e7\u00e3o de registros de pacientes e no fomento de parcerias para pesquisa e desenvolvimento de terapias\u201d, afirma o Dr. Jordi P\u00e9rez L\u00f3pez, especialista em doen\u00e7as raras e chefe da unidade de Aconselhamento e Liga\u00e7\u00e3o com Pacientes da CENTOGENE.<\/p>\n<p>Uma das tarefas mais importantes das organiza\u00e7\u00f5es de pacientes \u00e9 informar e capacitar os m\u00e9dicos de aten\u00e7\u00e3o prim\u00e1ria, para que aprendam a detectar as diversas condi\u00e7\u00f5es relacionadas a essas doen\u00e7as. Muitos pacientes s\u00e3o crian\u00e7as, e \u00e9 essencial para o seu desenvolvimento receber um diagn\u00f3stico preciso em tenra idade. Atualmente, muitas delas geralmente s\u00f3 recebem um diagn\u00f3stico correto entre os 10 e 15 anos de idade.<\/p>\n<p>No M\u00e9xico, o primeiro passo para diagnosticar uma doen\u00e7a rara \u00e9 a triagem neonatal, que, por lei, \u00e9 obrigat\u00f3ria para todos os rec\u00e9m-nascidos no pa\u00eds. Atualmente, organiza\u00e7\u00f5es de pacientes e muitos m\u00e9dicos est\u00e3o pressionando para que dist\u00farbios metab\u00f3licos mais trat\u00e1veis tamb\u00e9m sejam inclu\u00eddos na triagem, a fim de garantir um diagn\u00f3stico o mais precoce poss\u00edvel e possibilitar tratamentos urgentes que podem salvar vidas.<\/p>\n<p>\u201cO Grupo Fabry est\u00e1 empenhado em proporcionar aos pacientes acesso ao tratamento de primeira linha\u201d, afirma Alejandra Zamora, Coordenadora Nacional do Programa de Pacientes do Grupo Fabry do M\u00e9xico. \u201cNosso principal desafio \u00e9 garantir que os pacientes recebam o que lhes \u00e9 de direito: um diagn\u00f3stico precoce e o tratamento adequado. Ao mesmo tempo, trabalhamos para apoiar os m\u00e9dicos, fornecendo-lhes as informa\u00e7\u00f5es necess\u00e1rias para tratar o paciente de acordo com as diretrizes m\u00e9dicas internacionais.\u201d<\/p>\n<p>A Organiza\u00e7\u00e3o Mexicana para Doen\u00e7as Raras (OMER) foi fundada em 2010 como uma organiza\u00e7\u00e3o guarda-chuva para grupos de autoajuda de doen\u00e7as raras no M\u00e9xico, com a miss\u00e3o de conectar todas essas associa\u00e7\u00f5es. A OMER busca dar voz aos pacientes com doen\u00e7as raras e apoi\u00e1-los em sua luta pela melhor qualidade de vida e pelo acesso a cuidados m\u00e9dicos adequados. Isso implica conectar autoridades locais e federais, bem como todos os envolvidos nas estruturas de sa\u00fade p\u00fablica. Atualmente, a OMER \u00e9 composta por 30 associa\u00e7\u00f5es de pacientes, entre elas a MPS Jajax AC e o Grupo Fabry do M\u00e9xico.<\/p>\n<p>\u201cDevemos nos esfor\u00e7ar para formar uma frente \u00fanica, onde possamos coletivamente pressionar por servi\u00e7os m\u00e9dicos de melhor qualidade, acesso a diagn\u00f3sticos e terapias para melhorar significativamente a qualidade de vida dos pacientes. Este sempre foi o nosso objetivo\u2019, afirma o Dr. Jesus Navarro, Presidente da OMER. \u201dConvido voc\u00ea a se juntar a n\u00f3s neste esfor\u00e7o para dar voz aos pacientes com doen\u00e7as raras e suas fam\u00edlias no M\u00e9xico, para defender, proteger e promover seus direitos, e para sermos uma fonte de informa\u00e7\u00e3o, aconselhando, informando e apoiando pacientes, grupos e associa\u00e7\u00f5es \u2013 ajudando-os a prevenir e cuidar de doen\u00e7as raras.\u201c<\/p>\n<p>Mais informa\u00e7\u00f5es podem ser encontradas online.<\/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\" 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><br \/> &nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>On Saturday, February 29th, CENTOGENE, OMER, and ALIBER will celebrate International Rare Disease Day with an event for patients, healthcare [&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-2367","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>Rare Disease Associations Fight for Better Patient Health Care | CENTOGENE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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