{"id":10363,"date":"2025-09-23T16:25:00","date_gmt":"2025-09-23T14:25:00","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=10363"},"modified":"2025-09-23T16:25:00","modified_gmt":"2025-09-23T14:25:00","slug":"alapa-alianza-argentina-de-pacientes-comparte-actividades-de-alapa-junto-a-la-uba-fcen-en-el-programa-exactas-epof","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2025\/09\/23\/alapa-alianza-argentina-de-pacientes-comparte-actividades-de-alapa-junto-a-la-uba-fcen-en-el-programa-exactas-epof\/","title":{"rendered":"ALAPA &#8211; Alianza Argentina de Pacientes comparte: Actividades de ALAPA junto a la UBA-FCEN en el Programa EXACTAS-EPOF"},"content":{"rendered":"<p>En 2024, la *Alianza Argentina de Pacientes (ALAPA)* y la *Facultad de Ciencias Exactas y Naturales de la Universidad de Buenos Aires (UBA-FCEN)* pusieron en marcha el *Programa de Enfermedades Poco Frecuentes (EXACTAS-EPOF)*, resultado de la articulaci\u00f3n entre ambas instituciones.<\/p>\n<p>En este marco se cre\u00f3 el *Programa de Becas para Estudiantes de FCEN-UBA en Enfermedades Poco Frecuentes 2025-2026. Tras la convocatoria de proyectos de investigaci\u00f3n y el proceso de evaluaci\u00f3n acad\u00e9mica, el pasado **22 de septiembre se asignaron 12 becas de un a\u00f1o de duraci\u00f3n* a estudiantes en formaci\u00f3n.<\/p>\n<p>Con el apoyo econ\u00f3mico de la empresa *Ultragenyx, la coordinaci\u00f3n de la Facultad y la participaci\u00f3n de ALAPA junto con un jurado acad\u00e9mico, los proyectos seleccionados abarcan enfermedades como: **leucemia linfobl\u00e1stica aguda (LLA), s\u00edndrome de Rett, fibrosis qu\u00edstica, anemia de Fanconi, hipopituitarismo cong\u00e9nito, una variante de splicing en IL2RB, glioma pedi\u00e1trico de alto grado, s\u00edndrome de Hutchinson\u2013Gilford, fibrodysplasia ossificans progressiva (FOP), s\u00edndrome de MELAS, s\u00edndrome de Wyburn-Mason y fiebre hemorr\u00e1gica argentina (FHA).*<\/p>\n<p>Asimismo, dentro del mismo programa *EXACTAS-EPOF, se llevar\u00e1 a cabo un **curso introductorio a la \u00e9tica en investigaci\u00f3n, dictado por la profesora **Ana Palmero, consultora del **Comit\u00e9 Revisor de \u00c9tica (ERC), Unidad de \u00c9tica y Gobernanza en Salud Global de la Organizaci\u00f3n Mundial de la Salud (OMS)*.<\/p>\n<p>El curso est\u00e1 dirigido a *investigadores, estudiantes, pacientes y organizaciones, y constar\u00e1 de **cuatro clases virtuales semanales, a realizarse cada mi\u00e9rcoles a lo largo de cuatro semanas, comenzando el **mi\u00e9rcoles 24 de septiembre. Todas las clases quedar\u00e1n grabadas y disponibles posteriormente en **YouTube*, garantizando un acceso amplio y abierto al conocimiento.<\/p>\n<p>Con estas iniciativas, ALAPA y la UBA-FCEN buscan fortalecer la formaci\u00f3n de nuevos investigadores, impulsar el estudio de enfermedades poco frecuentes y promover una investigaci\u00f3n con perspectiva \u00e9tica, inclusiva y comprometida con la sociedad.<\/p>\n<p><img fetchpriority=\"high\" decoding=\"async\" class=\"aligncenter wp-image-10364 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a1-2.jpeg\" alt=\"\" width=\"1600\" height=\"900\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a1-2.jpeg 1600w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a1-2-300x169.jpeg 300w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a1-2-1024x576.jpeg 1024w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a1-2-768x432.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a1-2-1536x864.jpeg 1536w\" sizes=\"(max-width: 1600px) 100vw, 1600px\" \/><\/p>\n<p><img decoding=\"async\" class=\"aligncenter wp-image-10365 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a2-3.jpeg\" alt=\"\" width=\"1600\" height=\"900\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a2-3.jpeg 1600w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a2-3-300x169.jpeg 300w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a2-3-1024x576.jpeg 1024w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a2-3-768x432.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a2-3-1536x864.jpeg 1536w\" sizes=\"(max-width: 1600px) 100vw, 1600px\" \/><\/p>\n<p><img decoding=\"async\" class=\"aligncenter wp-image-10366 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a3.jpeg\" alt=\"\" width=\"1500\" height=\"1000\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a3.jpeg 1500w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a3-300x200.jpeg 300w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a3-1024x683.jpeg 1024w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a3-768x512.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a3-750x500.jpeg 750w\" sizes=\"(max-width: 1500px) 100vw, 1500px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-10367 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a4.jpeg\" alt=\"\" width=\"1500\" height=\"1000\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a4.jpeg 1500w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a4-300x200.jpeg 300w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a4-1024x683.jpeg 1024w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a4-768x512.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a4-750x500.jpeg 750w\" sizes=\"(max-width: 1500px) 100vw, 1500px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-10368 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a5.jpeg\" alt=\"\" width=\"1200\" height=\"1600\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a5.jpeg 1200w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a5-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a5-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a5-1152x1536.jpeg 1152w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-10369 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a6.jpeg\" alt=\"\" width=\"1200\" height=\"1600\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a6.jpeg 1200w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a6-225x300.jpeg 225w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a6-768x1024.jpeg 768w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a6-1152x1536.jpeg 1152w\" sizes=\"(max-width: 1200px) 100vw, 1200px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-10370 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a7.jpeg\" alt=\"\" width=\"651\" height=\"831\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a7.jpeg 651w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a7-235x300.jpeg 235w\" sizes=\"(max-width: 651px) 100vw, 651px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-10371 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a8.jpeg\" alt=\"\" width=\"645\" height=\"729\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a8.jpeg 645w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a8-265x300.jpeg 265w\" sizes=\"(max-width: 645px) 100vw, 645px\" \/><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter wp-image-10372 size-full\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a9.jpeg\" alt=\"\" width=\"603\" height=\"756\" srcset=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a9.jpeg 603w, https:\/\/aliber.org\/web\/wp-content\/uploads\/2025\/09\/a9-239x300.jpeg 239w\" sizes=\"(max-width: 603px) 100vw, 603px\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>En 2024, la *Alianza Argentina de Pacientes (ALAPA)* y la *Facultad de Ciencias Exactas y Naturales de la Universidad de Buenos Aires (UBA-FCEN)* pusieron en marcha el *Programa de Enfermedades<a href=\"https:\/\/aliber.org\/web\/2025\/09\/23\/alapa-alianza-argentina-de-pacientes-comparte-actividades-de-alapa-junto-a-la-uba-fcen-en-el-programa-exactas-epof\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":1,"featured_media":10368,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[3,138,7],"tags":[],"class_list":["post-10363","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-eventos","category-noticias","category-socios"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10363","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/comments?post=10363"}],"version-history":[{"count":1,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10363\/revisions"}],"predecessor-version":[{"id":10373,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/10363\/revisions\/10373"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media\/10368"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=10363"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=10363"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=10363"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}