{"id":10648,"date":"2021-06-21T11:27:49","date_gmt":"2021-06-21T09:27:49","guid":{"rendered":"https:\/\/www.sandiafashion.com\/?post_type=pql&#038;p=10648"},"modified":"2021-06-21T11:27:52","modified_gmt":"2021-06-21T09:27:52","slug":"rail-red-de-ayuda-integral-leucodistrofias","status":"publish","type":"pql","link":"https:\/\/www.sandiafashion.com\/en\/proyectos-que-laten\/rail-red-de-ayuda-integral-leucodistrofias\/","title":{"rendered":"RAIL Red de ayuda Integral Leucodistrofias"},"content":{"rendered":"\n<p>La Asociaci\u00f3n ELA-Espa\u00f1a Leucodistrofias, ayuda de manera integral a las familias afectadas por este grupo de patolog\u00edas. Las Leucodistrofias son enfermedades neurodegenerativas caracterizadas por la perdida progresiva o la malformaci\u00f3n de la mielina. La mielina es la sustancia blanca que recubre los nervios y permite el paso de los impulsos nerviosos desde el cerebro al resto de las partes del cuerpo.<\/p>\n\n\n\n<p>La malformaci\u00f3n o p\u00e9rdida de esta sustancia blanca supone que los afectados, que en su mayor\u00eda son ni\u00f1os, vayan perdiendo todas las capacidades paulatinamente. Es por ello que tanto los afectados como sus familias, necesitan una serie de recursos que en muchas ocasiones no cubre nuestro sistema sanitario. Para ello, desde el momento del diagnostico, la Asociaci\u00f3n acompa\u00f1a a la familia proporcion\u00e1ndole tanto el apoyo psicol\u00f3gico necesario para asumir su nueva realidad, como los apoyos econ\u00f3micos que permiten mantener la mejor calidad de vida de los afectados y su entorno.<\/p>\n\n\n\n<p>Dentro de Apial existe un programa, ANES de ayudas a necesidades especiales con el que cofinanciamos todo tipo de ayudas t\u00e9cnicas, gastos de farmacia, tratamiento, adaptaci\u00f3n veh\u00edculos y vivienda, etc, que no se ven cubiertos por el sistema.<\/p>\n","protected":false},"featured_media":10653,"menu_order":0,"template":"","format":"standard","meta":{"wprm-recipe-roundup-name":"","wprm-recipe-roundup-description":""},"categorias-proyectos-que-laten":[244],"class_list":["post-10648","pql","type-pql","status-publish","format-standard","has-post-thumbnail","hentry","categorias-proyectos-que-laten-salud"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>RAIL Red de ayuda Integral Leucodistrofias - Sand\u00eda Fashion<\/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.sandiafashion.com\/proyectos-que-laten\/rail-red-de-ayuda-integral-leucodistrofias\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"RAIL Red de ayuda Integral Leucodistrofias - Sand\u00eda Fashion\" \/>\n<meta property=\"og:description\" content=\"La Asociaci\u00f3n ELA-Espa\u00f1a Leucodistrofias, ayuda de manera integral a las familias afectadas por este grupo de patolog\u00edas. 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