{"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":"las-asociaciones-de-enfermedades-raras-luchan-por-una-mejor-atencion-sanitaria-para-los-pacientes","status":"publish","type":"post","link":"https:\/\/www.centogene.com\/es\/rare-disease-associations-fight-for-better-patient-health-care\/","title":{"rendered":"Las asociaciones de enfermedades raras luchan por una mejor atenci\u00f3n sanitaria para los pacientes"},"content":{"rendered":"<ul>\n<li>\n<ul>\n<li>El s\u00e1bado 29 de febrero, CENTOGENE, OMER y ALIBER celebrar\u00e1n el D\u00eda Internacional de las Enfermedades Raras con un evento para pacientes, profesionales de la salud y defensores para destacar las enfermedades raras.<\/li>\n<\/ul>\n<ul>\n<li>Una enfermedad rara es una enfermedad que afecta a menos de 5 de cada 10.000 personas. En conjunto, m\u00e1s personas se ven afectadas por enfermedades raras que por c\u00e1ncer y VIH juntos.<\/li>\n<\/ul>\n<ul>\n<li>Se estima que casi 8 millones de mexicanos padecen alguna enfermedad rara, lo que equivale al 51% de la poblaci\u00f3n.<\/li>\n<\/ul>\n<ul>\n<li>En M\u00e9xico existen alrededor de 180 asociaciones de pacientes de enfermedades raras activas.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p>Ciudad de M\u00e9xico, 28 de febrero de 2020: M\u00e1s de 300 participantes se reunir\u00e1n el 29 de febrero de 2020 en el Hotel Marriott Reforma de la Ciudad de M\u00e9xico para concientizar y fortalecer la comunidad de todas las personas afectadas por enfermedades raras. Pacientes, sus familias, asociaciones de pacientes, cient\u00edficos y especialistas m\u00e9dicos compartir\u00e1n sus experiencias y debatir\u00e1n los estudios m\u00e1s recientes, las opciones de diagn\u00f3stico, los tratamientos y las \u00e1reas de cooperaci\u00f3n.<\/p>\n<p>\u201cLa importancia de las asociaciones de pacientes de enfermedades raras es innegable. No solo realizan un valioso esfuerzo para visibilizar estas enfermedades y los problemas de las personas afectadas, sino que tambi\u00e9n participan activamente en la creaci\u00f3n de registros de pacientes, as\u00ed como en el impulso de la cooperaci\u00f3n en investigaci\u00f3n y desarrollo de terapias\u201d, afirma el Dr. Jordi P\u00e9rez L\u00f3pez, especialista en enfermedades raras y jefe de la unidad de Asesoramiento y Enlace con el Paciente de CENTOGENE.<\/p>\n<p>Una de las tareas m\u00e1s importantes de las organizaciones de pacientes es informar y capacitar a los m\u00e9dicos de atenci\u00f3n primaria para que aprendan a detectar las diversas afecciones asociadas a estas enfermedades. Muchos pacientes son ni\u00f1os, y es fundamental para su desarrollo recibir un diagn\u00f3stico preciso a una edad temprana. Actualmente, muchos de ellos suelen tener entre 10 y 15 a\u00f1os cuando finalmente reciben un diagn\u00f3stico preciso.<\/p>\n<p>En M\u00e9xico, el primer paso para diagnosticar una enfermedad rara es la prueba neonatal, obligatoria por ley para todos los reci\u00e9n nacidos en el pa\u00eds. Actualmente, organizaciones de pacientes y muchos m\u00e9dicos presionan para que se incluyan tambi\u00e9n en la prueba m\u00e1s trastornos metab\u00f3licos tratables, a fin de garantizar un diagn\u00f3stico lo m\u00e1s temprano posible y permitir tratamientos oportunos que salven vidas.<\/p>\n<p>\u201cGrupo Fabry se dedica a brindar a los pacientes acceso a tratamiento de primera l\u00ednea\u201d, afirma Alejandra Zamora, Coordinadora Nacional del Programa de Pacientes de Grupo Fabry de M\u00e9xico. \u201cNuestro principal reto es que los pacientes reciban lo que merecen: un diagn\u00f3stico temprano y un tratamiento adecuado. Al mismo tiempo, trabajamos para apoyar a los m\u00e9dicos para que obtengan la informaci\u00f3n necesaria para tratar al paciente de acuerdo con las directrices m\u00e9dicas internacionales\u201d.\u201d<\/p>\n<p>La Organizaci\u00f3n Mexicana de Enfermedades Raras (OMER) se fund\u00f3 en 2010 como una organizaci\u00f3n coordinadora de grupos de autoayuda de enfermedades raras en M\u00e9xico, con la misi\u00f3n de conectar a todas estas asociaciones. OMER busca dar voz a los pacientes de enfermedades raras y apoyarlos en su lucha por una mejor calidad de vida y una atenci\u00f3n m\u00e9dica adecuada. Esto implica conectar a las autoridades locales y federales, as\u00ed como a todos los actores involucrados en las estructuras de salud p\u00fablica. Actualmente, OMER est\u00e1 compuesta por 30 asociaciones de pacientes, entre ellas MPS Jajax AC y Grupo Fabry de M\u00e9xico.<\/p>\n<p>\u201cDebemos esforzarnos por formar un frente com\u00fan, donde colectivamente podamos impulsar servicios m\u00e9dicos de mejor calidad, acceso a diagn\u00f3sticos y terapias para mejorar significativamente la calidad de vida de los pacientes. Este siempre ha sido nuestro objetivo\u2019, afirma el Dr. Jes\u00fas Navarro, presidente de OMER. \u201dLos invito a unirse a nosotros en este esfuerzo para dar voz a los pacientes con enfermedades raras y a sus familias en M\u00e9xico, defender, proteger y promover sus derechos, y ser una fuente de informaci\u00f3n al asesorar, informar y apoyar a pacientes, grupos y asociaciones, ayud\u00e1ndolos a prevenir y atender las enfermedades raras\u201c.\u201d<\/p>\n<p>Puede encontrar m\u00e1s informaci\u00f3n en l\u00ednea.<\/p>\n<h5>Contacto de prensa:<\/h5>\n<p>CENTOGENE<br \/> <a href=\"mailto:press@centogene.com\" title=\"Escribe un correo electr\u00f3nico\">presione(at)centogene(dot)com<\/a><\/p>\n<p> ALIBER<br \/> <a href=\"mailto:aliber@aliber.org\" title=\"Escribe un correo electr\u00f3nico\">aliber(arroba)aliber(punto)org<\/a><\/p>\n<p> \u00d3MER<br \/> <a href=\"mailto:omer.proyectos@gmail.com\" title=\"Escribe un correo electr\u00f3nico\">omer.proyectos(arroba)gmail(punto)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\" 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