{"id":3005,"date":"2020-06-01T18:36:19","date_gmt":"2020-06-01T18:36:19","guid":{"rendered":"http:\/\/alianzapacientes.org\/?p=3005"},"modified":"2020-06-01T18:36:19","modified_gmt":"2020-06-01T18:36:19","slug":"reunion-con-representantes-del-ministerio-de-salud-de-la-nacion","status":"publish","type":"post","link":"https:\/\/www.marianakirby.com\/alapa\/2020\/06\/01\/reunion-con-representantes-del-ministerio-de-salud-de-la-nacion\/","title":{"rendered":"Reuni\u00f3n con representantes del Ministerio de Salud de la Naci\u00f3n"},"content":{"rendered":"<p>El pasado viernes, representantes de la <strong>Alianza Argentina de Pacientes \u2013 ALAPA<\/strong> y de diferentes organizaciones mantuvieron un encuentro virtual con el <strong>Dr. Alejandro Salvador Costa <\/strong>(subsecretario de Estrategias Sanitarias del Ministerio de Salud de la Naci\u00f3n) y el <strong>Dr. Marcelo Bellone<\/strong> (director Nacional de Intervenci\u00f3n en Cursos de Vida del Ministerio de Salud de la Naci\u00f3n) para hablar sobre la situaci\u00f3n de los pacientes con Enfermedades Poco Frecuentes.<\/p>\n<p><strong>Florencia Braga Men\u00e9ndez<\/strong>, directora General de Proyectos de ALAPA, detall\u00f3 los objetivos de nuestra Alianza y traz\u00f3 un panorama de la realidad que viven las personas con Enfermedades Poco Frecuentes en la Argentina.<\/p>\n<p>El Dr. Costa asegur\u00f3 que buscar\u00e1n en el corto plaza mostrar hechos y acciones concretas que sirvan para ayudar al pr\u00f3jimo con las herramientas con las que cuentan.<\/p>\n<p>&nbsp;<\/p>\n<figure id=\"attachment_3007\" aria-describedby=\"caption-attachment-3007\" style=\"width: 358px\" class=\"wp-caption aligncenter\"><img fetchpriority=\"high\" decoding=\"async\" class=\"wp-image-3007\" src=\"http:\/\/alianzapacientes.org\/wp-content\/uploads\/2020\/06\/Dr.-Costa-4-300x171.png\" alt=\"Dr. Alejandro Costa\" width=\"358\" height=\"204\" srcset=\"https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/06\/Dr.-Costa-4-300x171.png 300w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/06\/Dr.-Costa-4-1024x584.png 1024w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/06\/Dr.-Costa-4-768x438.png 768w, https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2020\/06\/Dr.-Costa-4.png 1163w\" sizes=\"(max-width: 358px) 100vw, 358px\" \/><figcaption id=\"caption-attachment-3007\" class=\"wp-caption-text\">Dr. Alejandro Costa<\/figcaption><\/figure>\n<p>&nbsp;<\/p>\n<p>Entre los pedidos realizadas por los representantes de las organizaciones figur\u00f3 la concreci\u00f3n de un registro de Enfermedades Poco Frecuentes en el pa\u00eds, que se puedan realizar ensayos cl\u00ednicos y que se avance con una Ley de Transparencia en el Costo de Producci\u00f3n de los Medicamentos.<\/p>\n<p>Braga Men\u00e9ndez afirm\u00f3: <em>\u201cen la Argentina hay casi 4 millones de personas con EPOF y no queremos que sigan siendo parte de pol\u00edticas vac\u00edas\u201d<\/em>.<\/p>\n<p>Por su lado, el Dr. Bellone cont\u00f3 que est\u00e1n trabajando en la revisi\u00f3n de todos los expedientes relacionados a las EPOF para ver en qu\u00e9 estado se encuentran y su contenido. Adem\u00e1s mostr\u00f3 su predisposici\u00f3n para seguir avanzando en conjunto.<\/p>\n<p>Desde ALAPA se est\u00e1 elaborando un documento que ser\u00e1 presentado pr\u00f3ximamente al Ministerio de Salud.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El pasado viernes, representantes de la Alianza Argentina de Pacientes \u2013 ALAPA y de diferentes organizaciones mantuvieron un encuentro virtual con el Dr. Alejandro Salvador Costa (subsecretario de Estrategias Sanitarias del Ministerio de Salud de la Naci\u00f3n) y el Dr. Marcelo Bellone (director Nacional de Intervenci\u00f3n en Cursos de Vida del Ministerio de Salud de [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":3006,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[7],"tags":[],"class_list":["post-3005","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-poco-frecuentes"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - 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