{"id":123,"date":"2021-11-18T14:21:28","date_gmt":"2021-11-18T14:21:28","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2021\/11\/18\/2021-11-18-the-raymond-a-wood-foundation-launches-roar-for-rare\/"},"modified":"2023-08-01T19:20:39","modified_gmt":"2023-08-01T19:20:39","slug":"2021-11-18-la-fundacion-raymond-a-wood-lanza-roar-for-rare","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2021\/11\/18\/2021-11-18-the-raymond-a-wood-foundation-launches-roar-for-rare\/","title":{"rendered":"La Fundaci\u00f3n Raymond A. Wood lanza ROAR para RARE"},"content":{"rendered":"<div class=\"sqs-html-content\">\n<h2 style=\"white-space:pre-wrap;\">Una campa\u00f1a de 18 meses para financiar cuatro proyectos de vital importancia<\/h2>\n<\/div>\n<div\n        class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\"\n        data-test=\"image-block-inline-outer-wrapper\"\n    ><\/p>\n<figure\n            class=\"sqs-block-image-figure              intrinsic\"\n            style=\"max-width:677px;\"\n        ><\/p>\n<div\n\n\n              class=\"image-block-wrapper\"\n              data-animation-role=\"image\"\n\n\n\n          ><\/p>\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"                position: relative;                  padding-bottom:129.09896850585938%;                overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black);              \"\n              ><\/p>\n<p>                  <noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/0d2923ac-bdc1-4e1f-bf09-ad5149cef0ca\/RAWF21-001+ROAR+for+RARE+Campaign+Logo_stacked.png\" alt=\"\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/0d2923ac-bdc1-4e1f-bf09-ad5149cef0ca\/RAWF21-001+ROAR+for+RARE+Campaign+Logo_stacked.png\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/0d2923ac-bdc1-4e1f-bf09-ad5149cef0ca\/RAWF21-001+ROAR+for+RARE+Campaign+Logo_stacked.png\" data-image-dimensions=\"677x874\" data-image-focal-point=\"0.5,0.5\" alt=\"\" data-load=\"false\" data-image-id=\"61980824986ccf72f89a46bf\" data-type=\"image\" \/><\/p><\/div>\n<\/p><\/div>\n<\/figure><\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">La Fundaci\u00f3n Raymond A. Wood (RAWF) -una organizaci\u00f3n de defensa de las enfermedades raras dirigida por pacientes- anuncia el lanzamiento de <strong>ROAR para RARE<\/strong>Una campa\u00f1a para recaudar $500.000 durante el pr\u00f3ximo a\u00f1o y medio con el fin de financiar cuatro proyectos de vital importancia que mejorar\u00e1n dr\u00e1sticamente la calidad de vida de los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios (H-P). <\/p>\n<p><em>\"Se trata de un esfuerzo ambicioso, pero estamos comprometidos a recaudar estos fondos cr\u00edticos para apoyar nuestros esfuerzos en la b\u00fasqueda de mejores soluciones para los supervivientes de tumores cerebrales raros\".<\/em> afirm\u00f3 la Directora Ejecutiva de RAWF, Amy Wood.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">En <strong>ROAR para RARE <\/strong>tiene como objetivo espec\u00edfico recaudar fondos para 1) el desarrollo de un medidor de sodio de uso dom\u00e9stico para una mejor gesti\u00f3n de la diabetes ins\u00edpida, una afecci\u00f3n a menudo provocada por los tumores H-P o su tratamiento, 2) el apoyo continuado al programa de analizadores de sangre port\u00e1tiles que ha demostrado ser beneficioso para mitigar las visitas a urgencias y las estancias hospitalarias de los pacientes pedi\u00e1tricos, 3) la concesi\u00f3n de peque\u00f1as becas de investigaci\u00f3n centradas en conseguir que m\u00e1s investigadores participen en la identificaci\u00f3n de diferentes enfoques para el tratamiento de los tumores cerebrales H-P y sus comorbilidades, y 4) la creaci\u00f3n de un centro de recursos en l\u00ednea de investigaci\u00f3n y especialistas tanto para supervivientes pedi\u00e1tricos como adultos.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Seg\u00fan la Directora de Desarrollo de la RAWF, Linda Hanifin Bonner, <em>\"La continua necesidad de nuestros recursos por parte de la comunidad m\u00e9dica y de pacientes, as\u00ed como el crecimiento de nuestro trabajo en los \u00faltimos cinco a\u00f1os, es una prueba clara de que hay que hacer m\u00e1s.\"&nbsp;<\/em><\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\"><strong>ROAR para RARE<\/strong> es una llamada a la acci\u00f3n que representa el importante hecho de que, para empezar, los tumores H-P son raros y, debido a su localizaci\u00f3n en el cerebro, ellos (o su tratamiento) pueden causar otras afecciones m\u00e9dicas raras y de por vida. La campa\u00f1a fue desarrollada por Carrie Haynes de <a href=\"https:\/\/www.causecreativenow.com\"><span style=\"text-decoration:underline\">Causa Creativa<\/span><\/a> bajo la direcci\u00f3n de Hanifin Bonner.&nbsp;<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Para m\u00e1s informaci\u00f3n sobre esta campa\u00f1a y conocer las historias de nuestros supervivientes, visite <a href=\"https:\/\/www.rawoodfoundation.org\/es\/\"><span style=\"text-decoration:underline\"><strong>rawoodfoundation.org\/roar<\/strong><\/span><\/a><\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\">La Fundaci\u00f3n Raymond A. Wood (RAWF) -una organizaci\u00f3n de defensa de las enfermedades raras dirigida por pacientes- anuncia el lanzamiento de <strong>ROAR para RARE<\/strong>Una campa\u00f1a para recaudar $500.000 durante el pr\u00f3ximo a\u00f1o y medio con el fin de financiar cuatro proyectos de vital importancia que mejorar\u00e1n dr\u00e1sticamente la calidad de vida de los supervivientes de tumores cerebrales hipotal\u00e1mico-hipofisarios (H-P). <\/p>","protected":false},"author":6,"featured_media":124,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[30,1],"tags":[],"class_list":["post-123","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rawf-news","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>The Raymond A. 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Wood Foundation (RAWF) \u2013 a patient-led, rare disease advocacy organization \u2013 announces the launch of ROAR for RARE, a campaign to raise $500,000 over the next year and a half to fund four critically needed projects that will drastically improve the quality of life for hypothalamic-pituitary (H-P) brain tumor survivors.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.rawoodfoundation.org\/es\/2021\/11\/18\/2021-11-18-la-fundacion-raymond-a-wood-lanza-roar-for-rare\/\" \/>\n<meta property=\"og:site_name\" content=\"Raymond A. 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