{"id":4873,"date":"2020-05-07T14:06:14","date_gmt":"2020-05-07T12:06:14","guid":{"rendered":"https:\/\/aliber.org\/web\/?p=4873"},"modified":"2020-05-07T14:06:14","modified_gmt":"2020-05-07T12:06:14","slug":"por-un-marco-normativo-comun-campana-dia-mundial-de-las-enfermedades-raras-2020","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2020\/05\/07\/por-un-marco-normativo-comun-campana-dia-mundial-de-las-enfermedades-raras-2020\/","title":{"rendered":"POR UN MARCO NORMATIVO COM\u00daN: Campa\u00f1a D\u00eda Mundial de las Enfermedades Raras 2020"},"content":{"rendered":"\n<p>ALIBER con la colaboraci\u00f3n del departamento de comunicaci\u00f3n de FEDER desarroll\u00f3 una muy bien lograda campa\u00f1a para conmemorar el D\u00eda Mundial de las Enfermedades Raras del a\u00f1o en curso, con el objetivo de que fuese replicada en todos los pa\u00edses en donde tiene representaci\u00f3n ALIBER a trav\u00e9s de las Organizaciones y Asociaciones que trabajan por el Colectivo de Pacientes y Familias con Enfermedades Raras, Poco Frecuentes o Sin Diagn\u00f3stico.<\/p>\n\n\n\n<p>Desde esta iniciativa prepararon un compendio con la informaci\u00f3n utilizada en otras campa\u00f1as anteriores y realizaron un dossier para que cada entidad miembro de la Alianza adem\u00e1s de realizar sus actos propios en cada pa\u00eds, fueran portavoces de ALIBER y utilizaran dicho material realizando alguna acci\u00f3n en redes sociales, medios de comunicaci\u00f3n, actos de participaci\u00f3n p\u00fablica, entre otros.<\/p>\n\n\n\n<p>Con esta estrategia de comunicaci\u00f3n se busc\u00f3 dar visibilidad al D\u00eda Mundial de las Enfermedades Raras desde ALIBER con un posicionamiento que se comparti\u00f3 a todos los socios de la Alianza junto con un documento que contemplaba diferentes acciones para que pudieran ser socializadas por cada uno, logrando que fuese replicada por muchos de ellos.   <\/p>\n\n\n\n<p>Extendemos un caluroso agradecimiento al Departamento de Comunicaci\u00f3n de FEDER por tan maravilloso aporte en el desarrollo de esta propuesta.<\/p>\n\n\n\n<p>A continuaci\u00f3n compartimos el material objeto de la campa\u00f1a:<\/p>\n\n\n\n<figure class=\"wp-block-gallery columns-3 is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\"><ul class=\"blocks-gallery-grid\"><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-1-1-767x1024.jpeg\" alt=\"\" data-id=\"4875\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-1-1.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4875\" class=\"wp-image-4875\"\/><\/figure><\/li><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-2-726x1024.jpeg\" alt=\"\" data-id=\"4876\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-2.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4876\" class=\"wp-image-4876\"\/><\/figure><\/li><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-3-730x1024.jpeg\" alt=\"\" data-id=\"4877\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-3.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4877\" class=\"wp-image-4877\"\/><\/figure><\/li><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-4-720x1024.jpeg\" alt=\"\" data-id=\"4878\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-4.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4878\" class=\"wp-image-4878\"\/><\/figure><\/li><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-5-723x1024.jpeg\" alt=\"\" data-id=\"4879\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-5.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4879\" class=\"wp-image-4879\"\/><\/figure><\/li><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-6-725x1024.jpeg\" alt=\"\" data-id=\"4880\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-6.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4880\" class=\"wp-image-4880\"\/><\/figure><\/li><\/ul><\/figure>\n\n\n\n<p>Cartel Oficial:<\/p>\n\n\n\n<figure class=\"wp-block-gallery columns-1 is-cropped wp-block-gallery-2 is-layout-flex wp-block-gallery-is-layout-flex\"><ul class=\"blocks-gallery-grid\"><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-735x1024.jpeg\" alt=\"\" data-id=\"4881\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4881\" class=\"wp-image-4881\"\/><\/figure><\/li><\/ul><\/figure>\n\n\n\n<p>Dec\u00e1logo:<\/p>\n\n\n\n<figure class=\"wp-block-gallery columns-3 is-cropped wp-block-gallery-3 is-layout-flex wp-block-gallery-is-layout-flex\"><ul class=\"blocks-gallery-grid\"><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-7-802x1024.jpeg\" alt=\"\" data-id=\"4882\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-7.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4882\" class=\"wp-image-4882\"\/><\/figure><\/li><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-8-753x1024.jpeg\" alt=\"\" data-id=\"4883\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-8.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4883\" class=\"wp-image-4883\"\/><\/figure><\/li><li class=\"blocks-gallery-item\"><figure><img decoding=\"async\" src=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-9-804x1024.jpeg\" alt=\"\" data-id=\"4884\" data-full-url=\"https:\/\/aliber.org\/web\/wp-content\/uploads\/2020\/05\/WhatsApp-Image-2020-05-07-at-6.34.29-AM-9.jpeg\" data-link=\"https:\/\/aliber.org\/web\/?attachment_id=4884\" class=\"wp-image-4884\"\/><\/figure><\/li><\/ul><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>ALIBER con la colaboraci\u00f3n del departamento de comunicaci\u00f3n de FEDER desarroll\u00f3 una muy bien lograda campa\u00f1a para conmemorar el D\u00eda Mundial de las Enfermedades Raras del a\u00f1o en curso, con<a href=\"https:\/\/aliber.org\/web\/2020\/05\/07\/por-un-marco-normativo-comun-campana-dia-mundial-de-las-enfermedades-raras-2020\/\">[&#8230;]<\/a><\/p>\n","protected":false},"author":2,"featured_media":4874,"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":[2,32,138,7],"tags":[],"class_list":["post-4873","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aliber","category-diamundialeerr","category-noticias","category-socios"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/4873","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\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/comments?post=4873"}],"version-history":[{"count":0,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/4873\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=4873"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=4873"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=4873"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}