{"id":4719,"date":"2023-01-02T14:25:25","date_gmt":"2023-01-02T14:25:25","guid":{"rendered":"http:\/\/alianzapacientes.org\/?p=4719"},"modified":"2023-01-02T14:25:25","modified_gmt":"2023-01-02T14:25:25","slug":"el-2022-en-numeros","status":"publish","type":"post","link":"https:\/\/www.marianakirby.com\/alapa\/2023\/01\/02\/el-2022-en-numeros\/","title":{"rendered":"El 2022 en n\u00fameros"},"content":{"rendered":"<p>Ha concluido un nuevo a\u00f1o en el que nuestra asociaci\u00f3n ha dado grandes pasos por los pacientes de la Argentina.<\/p>\n<p>Luego del freno por la pandemia, hemos vuelto a tener presencia en diferentes provincias del pa\u00eds participando y organizando diferentes actividades.<\/p>\n<p>Aqu\u00ed hacemos un peque\u00f1o resumen con algunas de las acciones del a\u00f1o que pas\u00f3.<\/p>\n<p>&nbsp;<\/p>\n<ul>\n<li>En el marco del <strong>D\u00eda Mundial de las Enfermedades Poco Frecuentes<\/strong> realizamos <strong>2 campa\u00f1as nacionales<\/strong> de visibilizaci\u00f3n y una marcha con la entrega del petitorio de los pacientes de ALAPA en 5 organismos nacionales.<\/li>\n<li>23 pacientes con Amiloidosis Hereditaria fueron atendidos en el programa integral del Hospital Brit\u00e1nico.<\/li>\n<li>10 pacientes se realizaron el estudio de fibras finas QST.<\/li>\n<li>Colaboramos en la organizaci\u00f3n de jornadas sobre S\u00edndrome de Sj\u00f6gren, Anemia de Fanconi, enfermedad de Fabry, Pompe, Gaucher, Trimetilaminuria, enfermedades mitocondriales, Uve\u00edstis.<\/li>\n<li>Realizamos un evento virtual sobre Amiloidosis Hereditaria con la Uni\u00f3n Latinoamericana de Pacientes &#8211; ULAPA.<\/li>\n<li>Llevamos a cabo un evento virtual con <strong>ULAPA sobre Justicia Sanitaria<\/strong>.<\/li>\n<li>5 reuniones con diferentes prestadores de salud para lograr mejorar el acceso a los medicamentos de alto precio.<\/li>\n<li>Hicimos reuniones con el <strong>Ministerio de Salud y el Ministerio de Ciencia, Innovaci\u00f3n y Tecnolog\u00eda<\/strong> para trabajar proyectos en conjunto.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><iframe title=\"Florencia Braga - Mes de las EPOF 2022\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/lkzWxbQLvrg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>&nbsp;<\/p>\n<ul>\n<li>2 campa\u00f1as en redes sociales para reclamar la falta de acceso a las prestaciones para pacientes con enfermedades poco frecuentes.<\/li>\n<li>Participamos del Podcast \u201cRaras pero Reales\u201d llevando testimonios de pacientes.<\/li>\n<li>15 viajes de trabajo de campo a diferentes provincias y zonas rurales de nuestro pa\u00eds (Chaco, Santiago del Estero, Santa Fe, Entre R\u00edos y Buenos Aires).<\/li>\n<li>10 asambleas abiertas latinoamericanas de pacientes.<\/li>\n<li>30 pacientes recibieron atenci\u00f3n psicol\u00f3gica gratuita en el centro de Salud Mental virtual de ALAPA.<\/li>\n<li>51 talleres virtuales para pacientes con patolog\u00edas cr\u00f3nicas a cargo de 2 psic\u00f3logas.<\/li>\n<li>2 encuentros presenciales para pacientes con Amiloidosis Hereditaria en Navarro, provincia de Buenos Aires y en Rosario, provincia de Santa Fe.<\/li>\n<li>2 eventos virtuales sobre Amiloidosis Hereditaria para profesionales de la salud y para pacientes en conjunto con el Hospital Italiano y el Hospital El Cruce.<\/li>\n<li>6 talleres de fortalecimiento para pacientes y 2 de asesoramiento jur\u00eddico.<\/li>\n<li>1 capacitaci\u00f3n en gen\u00e9tica y enfermedades poco frecuentes para pacientes.<\/li>\n<li>Tuvimos presencia con Stand de ALAPA en 6 eventos provinciales.<\/li>\n<li>Presencia en radios y en programas de Tv durante todo el a\u00f1o.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><iframe title=\"Carolina Oliveto - Balance 2022\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/qjUvUL7w3yg?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ha concluido un nuevo a\u00f1o en el que nuestra asociaci\u00f3n ha dado grandes pasos por los pacientes de la Argentina. Luego del freno por la pandemia, hemos vuelto a tener presencia en diferentes provincias del pa\u00eds participando y organizando diferentes actividades. Aqu\u00ed hacemos un peque\u00f1o resumen con algunas de las acciones del a\u00f1o que pas\u00f3. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4720,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[6,7,8],"tags":[],"class_list":["post-4719","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-discapacidad","category-enfermedades-poco-frecuentes","category-salud"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>El 2022 en n\u00fameros - Alianza Argentina de Pacientes - ALAPA<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.marianakirby.com\/alapa\/2023\/01\/02\/el-2022-en-numeros\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"El 2022 en n\u00fameros - Alianza Argentina de Pacientes - ALAPA\" \/>\n<meta property=\"og:description\" content=\"Ha concluido un nuevo a\u00f1o en el que nuestra asociaci\u00f3n ha dado grandes pasos por los pacientes de la Argentina. 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