{"id":5151,"date":"2024-03-03T23:42:12","date_gmt":"2024-03-03T23:42:12","guid":{"rendered":"https:\/\/alianzapacientes.org\/?p=5151"},"modified":"2024-03-03T23:42:12","modified_gmt":"2024-03-03T23:42:12","slug":"alapa-en-el-dia-de-las-epof","status":"publish","type":"post","link":"https:\/\/www.marianakirby.com\/alapa\/2024\/03\/03\/alapa-en-el-dia-de-las-epof\/","title":{"rendered":"ALAPA en el D\u00eda de las EPOF"},"content":{"rendered":"

Desde la Alianza Argentina de Pacientes \u2013 ALAPA<\/strong> el eje estuvo puesto en acciones de alto impacto para visibilizar a las Enfermedades Poco Frecuentes<\/strong>.<\/p>\n

 <\/p>\n

Estaciones Retiro y Constituci\u00f3n<\/strong><\/span><\/h3>\n

El 28 de febrero<\/strong>, con el apoyo de l\u00edderes de organizaciones de pacientes y de la Unidad de Discapacidad de Trenes Argentinos<\/strong> se brind\u00f3 asesoramiento gratuito<\/strong> y se entreg\u00f3 informaci\u00f3n a pasajeros en las estaciones de trenes de<\/strong> Constituci\u00f3n (L\u00ednea Roca) y Retiro (L\u00ednea Mitre)<\/strong>.<\/p>\n

 <\/p>\n

\"\"
En la Estaci\u00f3n Retiro<\/figcaption><\/figure>\n

 <\/p>\n

Agradecemos a Roberto Ingratta, Elizabeth Ferreira y Yesica Cubilla (Trenes Argentinos<\/a>), Ver\u00f3nica Alonso (Asociaci\u00f3n Mucopolisacaridosis Argentina<\/a>), Ana Salas (EscleroSalud<\/a>), Natalia Torres (Jaz Mitocondriales Argentina<\/a>) y Raquel G\u00f3mez (Osteogenesis Imperfecta) por acompa\u00f1arnos en esta iniciativa en dos puntos transitados por miles de personas.<\/p>\n

 <\/p>\n

\"\"
En la Estaci\u00f3n Constituci\u00f3n<\/figcaption><\/figure>\n

 <\/p>\n

Jornada en Cero + Infinito<\/strong><\/span><\/h3>\n

El 29 de febrero<\/strong> volvimos a realizar nuestra jornada por el D\u00eda Mundial de las Enfermedades Poco Frecuentes<\/strong> en el Edificio Cero + Infinito<\/strong> de la Facultad de Ciencias Exactas y Naturales de la Universidad de Buenos Aires – UBA<\/strong>.<\/p>\n

 <\/p>\n

\"\"
Grupo EPOF Almirante Brown<\/figcaption><\/figure>\n

 <\/p>\n

Contamos con charlas de l\u00edderes de organizaciones de pacientes, profesionales de la salud e investigadores en un encuentro de m\u00e1s de seis horas.<\/p>\n

 <\/p>\n

\"\"
Reconocimientos ALAPA 2024<\/figcaption><\/figure>\n

 <\/p>\n

Adem\u00e1s, entregamos reconocimientos a personas que en el \u00faltimo a\u00f1o se han destacado por su apoyo a las y los pacientes con EPOF y cerramos con un show a cargo de \u201cTodos hacemos m\u00fasica<\/strong>\u201d.<\/p>\n

 <\/p>\n

 <\/p>\n

El compromiso del f\u00fatbol<\/strong><\/span><\/h3>\n

Entre el 29 de febrero y el 3 de marzo<\/strong> se disput\u00f3 la 8\u00b0 fecha<\/strong> de la Liga Profesional de F\u00fatbol de la AFA<\/strong> y en todos los partidos, los planteles posaron con un cartel con la frase:<\/p>\n

Hoy jugamos por los 4 millones de argentinos con Enfermedades Poco Frecuentes.<\/strong><\/span><\/h5>\n
M\u00e1s informaci\u00f3n en www.alianzapacientes.org<\/a><\/strong><\/span><\/h5>\n

 <\/p>\n

\"\"
Liga Profesional de F\u00fatbol<\/figcaption><\/figure>\n

 <\/p>\n

Queremos destacar la inmensa predisposici\u00f3n de la Liga Profesional de F\u00fatbol para acompa\u00f1arnos en una acci\u00f3n que lleg\u00f3 a millones de argentinos y argentinas.<\/p>\n

 <\/p>\n

\"\"
Liga Profesional de F\u00fatbol<\/figcaption><\/figure>\n

 <\/p>\n

En toda la Argentina<\/strong><\/span><\/h3>\n

Diferentes municipios de la provincia de Buenos Aires se sumaron iluminando sus edificios p\u00fablicos y monumentos.<\/p>\n

Tambi\u00e9n, se llevaron a cabo acciones en simult\u00e1neo en Bell Ville<\/strong>, C\u00f3rdoba, en El Calafate <\/strong>con un picnic junto al Hospital SAMIC, y en Misiones<\/strong>.<\/p>\n

El Grupo Argentino de Pacientes con Uve\u00edtis<\/strong> adem\u00e1s se sum\u00f3 con la elaboraci\u00f3n de un marco de fotos que sirvi\u00f3 para colmar las redes sociales con mensajes por el D\u00eda Mundial de las EPOF.<\/p>\n","protected":false},"excerpt":{"rendered":"

Desde la Alianza Argentina de Pacientes \u2013 ALAPA el eje estuvo puesto en acciones de alto impacto para visibilizar a las Enfermedades Poco Frecuentes.   Estaciones Retiro y Constituci\u00f3n El 28 de febrero, con el apoyo de l\u00edderes de organizaciones de pacientes y de la Unidad de Discapacidad de Trenes Argentinos se brind\u00f3 asesoramiento gratuito […]<\/p>\n","protected":false},"author":1,"featured_media":5152,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_joinchat":[],"footnotes":""},"categories":[7],"tags":[],"class_list":["post-5151","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-poco-frecuentes"],"yoast_head":"\nALAPA en el D\u00eda de las EPOF - 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\/2024\/03\/03\/alapa-en-el-dia-de-las-epof\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ALAPA en el D\u00eda de las EPOF - Alianza Argentina de Pacientes - ALAPA\" \/>\n<meta property=\"og:description\" content=\"Desde la Alianza Argentina de Pacientes \u2013 ALAPA el eje estuvo puesto en acciones de alto impacto para visibilizar a las Enfermedades Poco Frecuentes.   Estaciones Retiro y Constituci\u00f3n El 28 de febrero, con el apoyo de l\u00edderes de organizaciones de pacientes y de la Unidad de Discapacidad de Trenes Argentinos se brind\u00f3 asesoramiento gratuito […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.marianakirby.com\/alapa\/2024\/03\/03\/alapa-en-el-dia-de-las-epof\/\" \/>\n<meta property=\"og:site_name\" content=\"Alianza Argentina de Pacientes - ALAPA\" \/>\n<meta property=\"article:published_time\" content=\"2024-03-03T23:42:12+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.marianakirby.com\/alapa\/wp-content\/uploads\/2024\/03\/12.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1600\" \/>\n\t<meta property=\"og:image:height\" content=\"1068\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Mary\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Mary\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/2024\\\/03\\\/03\\\/alapa-en-el-dia-de-las-epof\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/2024\\\/03\\\/03\\\/alapa-en-el-dia-de-las-epof\\\/\"},\"author\":{\"name\":\"Mary\",\"@id\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/#\\\/schema\\\/person\\\/760e027a6f84dbb2308cc52837bafcee\"},\"headline\":\"ALAPA en el D\u00eda de las EPOF\",\"datePublished\":\"2024-03-03T23:42:12+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/2024\\\/03\\\/03\\\/alapa-en-el-dia-de-las-epof\\\/\"},\"wordCount\":495,\"image\":{\"@id\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/2024\\\/03\\\/03\\\/alapa-en-el-dia-de-las-epof\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/wp-content\\\/uploads\\\/2024\\\/03\\\/a1.jpeg\",\"articleSection\":[\"Enfermedades Poco Frecuentes\"],\"inLanguage\":\"es-AR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/2024\\\/03\\\/03\\\/alapa-en-el-dia-de-las-epof\\\/\",\"url\":\"https:\\\/\\\/www.marianakirby.com\\\/alapa\\\/2024\\\/03\\\/03\\\/alapa-en-el-dia-de-las-epof\\\/\",\"name\":\"ALAPA en el D\u00eda de las EPOF - 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