{"id":4712,"date":"2022-12-16T13:56:36","date_gmt":"2022-12-16T13:56:36","guid":{"rendered":"http:\/\/alianzapacientes.org\/?p=4712"},"modified":"2022-12-16T13:56:36","modified_gmt":"2022-12-16T13:56:36","slug":"1-ateneo-latinoamericano-ulapa-amiloidosis-hereditaria","status":"publish","type":"post","link":"https:\/\/www.marianakirby.com\/alapa\/2022\/12\/16\/1-ateneo-latinoamericano-ulapa-amiloidosis-hereditaria\/","title":{"rendered":"1\u00b0 Ateneo Latinoamericano ULAPA: Amiloidosis Hereditaria"},"content":{"rendered":"<p>El pr\u00f3ximo <strong>lunes 19 de diciembre<\/strong> a las <strong>10.00 horas<\/strong> (de la Argentina) se llevar\u00e1 a cabo el <strong>1\u00b0 Ateneo Latinoamericano <\/strong>organizado por la <a href=\"https:\/\/www.facebook.com\/unionulapa\" target=\"_blank\" rel=\"noopener\"><strong>Uni\u00f3n Latinoamericana de Pacientes con Enfermedades Raras, Hu\u00e9rfanas o Poco Frecuentes <\/strong>\u2013<strong> ULAPA<\/strong><\/a>.<\/p>\n<p>&nbsp;<\/p>\n<p>En esta ocasi\u00f3n, y por iniciativa de la Sra. Irma Mart\u00ednez, presidenta de la <a href=\"https:\/\/www.facebook.com\/abepof\" target=\"_blank\" rel=\"noopener\">Alianza Boliviana de Enfermedades Poco Frecuentes &#8211; ABEPOF<\/a>, el Ateneo ser\u00e1 sobre <a href=\"http:\/\/alianzapacientes.org\/amiloidosis\/\" target=\"_blank\" rel=\"noopener\">Amiloidosis Hereditaria<\/a>.<\/p>\n<p>&nbsp;<\/p>\n<p>El mismo se podr\u00e1 ver en vivo siguiendo este enlace: <a href=\"https:\/\/hospitalelcruce-org.zoom.us\/j\/82217456537?pwd=YktFdUZmQkxSdGpSQ0ppOTJlQXdWZz09\" target=\"_blank\" rel=\"noopener\">https:\/\/hospitalelcruce-org.zoom.us\/j\/82217456537?pwd=YktFdUZmQkxSdGpSQ0ppOTJlQXdWZz09<\/a><\/p>\n<p>ID de reuni\u00f3n: <strong>822 1745 6537<\/strong><br \/>\nC\u00f3digo de acceso: <strong>2022<\/strong><\/p>\n<p>&nbsp;<\/p>\n<h4><span style=\"color: #800080;\"><strong>Programa<\/strong><\/span><\/h4>\n<ul>\n<li>10.00 hs: Bienvenida a cargo del Dr. Ariel Saez de Guinoa, director del Hospital El Cruce HEC.<\/li>\n<li>Presentaci\u00f3n del Lic. David Pe\u00f1a, presidente de <a href=\"https:\/\/www.facebook.com\/FedMexEnfermedadesRaras\" target=\"_blank\" rel=\"noopener\">FEMEXER<\/a> y l\u00edder fundador de ULAPA.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li><strong>10.10 hs: Bloque de presentaci\u00f3n testimonial de pacientes.<\/strong><\/li>\n<li>Fabio Figueiredo de Almeida (Brasil): Necesidad de planificaci\u00f3n familiar y de implementaci\u00f3n de implantaci\u00f3n de embriones sanos como pol\u00edtica p\u00fablica dirigida a terminar con esta cruel enfermedad.<\/li>\n<li>Elwis Dur\u00e1n (Venezuela): Experiencia de los pacientes en pa\u00edses que no acceden a los tratamientos.<\/li>\n<li>Andrea Frione (Argentina): Proyecto de Ensayo Observacional Pedi\u00e1trico.<\/li>\n<li>Gonzalo Ni\u00f1o de Guzm\u00e1n (Bolivia): Sus s\u00edntomas y desarrollo natural de la enfermedad en su familia.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li><strong>10.40 hs: Presentaci\u00f3n cient\u00edfica de la Dra. Gisela Streitemberger<\/strong>, cardi\u00f3loga, investigadora: \u201cEstrategias para la comprensi\u00f3n, abordaje y tratamiento de la Amiloidosis Hereditaria desde la perspectiva del equipo m\u00e9dico\u201d.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li><strong>11.00 hs: Bloque Producci\u00f3n Regional P\u00fablica de Medicamentos.<\/strong><\/li>\n<li>Clarisa Marchetti, m\u00e9dica especialista en Pol\u00edtica de Medicamentos y Gesti\u00f3n Sanitaria.<\/li>\n<li>Arturo Hoya, farmac\u00e9utico, director T\u00e9cnico de la Unidad de Producci\u00f3n de Medicamentos de la Facultad de Ciencias Exactas de la Universidad Nacional de La Plata &#8211; UNLP.<\/li>\n<li>Adri\u00e1n Ariel Ruiz, farmac\u00e9utico, coordinador de \u00c1rea de Elaboraci\u00f3n de Medicamentos del Hospital El Cruce.<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<ul>\n<li><strong>11.15 hs: Preguntas (espacio de intercambio y di\u00e1logo).<\/strong><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p>Cierre a cargo de ALAPA.<\/p>\n<p>&nbsp;<\/p>\n<h4><span style=\"color: #800080;\"><strong>Horarios del Ateneo<\/strong><\/span><\/h4>\n<p>7.00 hs: Belice, Costa Rica, El Salvador, Guatemala, Honduras, M\u00e9xico, Nicaragua<\/p>\n<p>8.00 hs: Colombia, Cuba, Ecuador, Hait\u00ed, Jamaica, Panam\u00e1, Per\u00fa<\/p>\n<p>9.00 hs: Bolivia, Guyana, Rep\u00fablica Dominicana, Venezuela<\/p>\n<p>10.00 hs: Argentina, Brasil, Chile, Guayana Francesa, Paraguay, Surinam, Uruguay<\/p>\n","protected":false},"excerpt":{"rendered":"<p>El pr\u00f3ximo lunes 19 de diciembre a las 10.00 horas (de la Argentina) se llevar\u00e1 a cabo el 1\u00b0 Ateneo Latinoamericano organizado por la Uni\u00f3n Latinoamericana de Pacientes con Enfermedades Raras, Hu\u00e9rfanas o Poco Frecuentes \u2013 ULAPA. &nbsp; En esta ocasi\u00f3n, y por iniciativa de la Sra. Irma Mart\u00ednez, presidenta de la Alianza Boliviana de [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4713,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[7,8],"tags":[],"class_list":["post-4712","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","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>1\u00b0 Ateneo Latinoamericano ULAPA: Amiloidosis Hereditaria - 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\/2022\/12\/16\/1-ateneo-latinoamericano-ulapa-amiloidosis-hereditaria\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"1\u00b0 Ateneo Latinoamericano ULAPA: Amiloidosis Hereditaria - Alianza Argentina de Pacientes - ALAPA\" \/>\n<meta property=\"og:description\" content=\"El pr\u00f3ximo lunes 19 de diciembre a las 10.00 horas (de la Argentina) se llevar\u00e1 a cabo el 1\u00b0 Ateneo Latinoamericano organizado por la Uni\u00f3n Latinoamericana de Pacientes con Enfermedades Raras, Hu\u00e9rfanas o Poco Frecuentes \u2013 ULAPA. &nbsp; En esta ocasi\u00f3n, y por iniciativa de la Sra. 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