{"id":3500,"date":"2018-02-06T09:14:44","date_gmt":"2018-02-06T09:14:44","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/02\/06\/feder-protagonista-en-el-programa-cantabria-por-la-manana\/"},"modified":"2018-02-06T09:14:44","modified_gmt":"2018-02-06T09:14:44","slug":"feder-protagonista-en-el-programa-cantabria-por-la-manana","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/02\/06\/feder-protagonista-en-el-programa-cantabria-por-la-manana\/","title":{"rendered":"FEDER protagonista en el programa \u201cCantabria por la ma\u00f1ana\u201d"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-size: 9.5pt;line-height: 115%\">En el marco del D\u00eda Mundial de las Enfermedades Raras, que se celebrar\u00e1 este 28 de febrero, nuestro Coordinador de Zona en Cantabria, Honorato Guti\u00e9rrez estuvo presente en una entrevista realizada por el programa de televisi\u00f3n \u201cCantabria por las ma\u00f1anas\u201d. Junto a \u00e9l estuvo tambi\u00e9n Mar\u00eda Santamar\u00eda, madre de una ni\u00f1a de 5 a\u00f1os con una enfermedad rara.&nbsp;<\/span><\/p>\n<p>La entrevista, guiada por Luc\u00eda Pombo, abarc\u00f3 gran variedad de temas en torno a las enfermedades raras. Durante su intervenci\u00f3n, Honorato Guti\u00e9rrez se\u00f1al\u00f3 que las enfermedades raras son aquellas que se producen en muy baja prevalencia y que pueden afectar a 1 de cada 5000 habitantes. Esto, por lo tanto, genera desconocimiento en la poblaci\u00f3n. Adem\u00e1s se\u00f1al\u00f3 que en la regi\u00f3n, FEDER ha registrado alrededor de 16 asociaciones que trabajan en el \u00e1mbito de las enfermedades raras y que el apoyo que reciben de nuestra parte se plasma a trav\u00e9s de la difusi\u00f3n, promoci\u00f3n y participaci\u00f3n en cada una de sus actividades que sensibilizan a la sociedad en torno a las enfermedades raras.<\/p>\n<p>Mar\u00eda Santamar\u00eda, fue otra de las entrevistas durante el programa. Ella tiene una hija, de cinco a\u00f1os, que convive con S\u00edndrome de Smith-Magenis que es un trastorno gen\u00e9tico complejo caracterizado por un d\u00e9ficit intelectual variable, trastornos del sue\u00f1o, anomal\u00edas craneofaciales y esquel\u00e9ticas, trastornos psiqui\u00e1tricos, y retraso motor y del habla. Durante su intervenci\u00f3n, Mar\u00eda se\u00f1al\u00f3 que el trabajo que realiza FEDER para socializar las enfermedades raras es de mucha importancia ya que ayuda a que m\u00e1s personas puedan conocer y comprender a los pacientes y sus familias que conviven con estas enfermedades.<\/p>\n<p>Durante su intervenci\u00f3n, nuestro Coordinador de Zona en Cantabria indic\u00f3 que motivar a la gente a que se una a la celebraci\u00f3n del D\u00eda Mundial de las Enfermedades Raras permite dar visibilidad e incidir en la investigaci\u00f3n que para FEDER es algo de vital importancia para poder mejor la calidad de los pacientes y sus familias.<\/p>\n<p>Finalmente, se\u00f1al\u00f3 que en Cantabria para conmemorar este D\u00eda Mundial se realizar\u00e1n actividades de informaci\u00f3n y divulgaci\u00f3n, adem\u00e1s el d\u00eda 27 de febrero, Domingo Gonz\u00e1lez-Lamu\u00f1o desarrollar\u00e1 una ponencia bajo el t\u00edtulo \u201cLas enfermedades raras: presente y futuro\u201d.<\/p>\n<p><a href=\"https:\/\/www.youtube.com\/watch?v=SrrnjLakyX8&amp;feature=youtu.be\">Puedes ver el video completo de la entrevista aqu\u00ed.<br \/><\/a><\/p>\n<p>&nbsp;<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 6 de febrero de 2018.&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/10031-feder-protagonista-en-el-programa-%E2%80%9Ccantabria-por-la-ma%C3%B1ana%E2%80%9D\" target=\"_blank\">FEDER protagonista en el programa \u201cCantabria por la ma\u00f1ana\u201d<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; &nbsp; En el marco del D\u00eda Mundial de las Enfermedades Raras, que se celebrar\u00e1 este 28 de febrero, nuestro Coordinador de Zona en Cantabria, Honorato Guti\u00e9rrez estuvo presente en una entrevista realizada por el programa de televisi\u00f3n \u201cCantabria por las ma\u00f1anas\u201d. Junto [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-3500","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FEDER protagonista en el programa \u201cCantabria por la ma\u00f1ana\u201d - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2018\/02\/06\/feder-protagonista-en-el-programa-cantabria-por-la-manana\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER protagonista en el programa \u201cCantabria por la ma\u00f1ana\u201d - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: &nbsp; &nbsp; En el marco del D\u00eda Mundial de las Enfermedades Raras, que se celebrar\u00e1 este 28 de febrero, nuestro Coordinador de Zona en Cantabria, Honorato Guti\u00e9rrez estuvo presente en una entrevista realizada por el programa de televisi\u00f3n \u201cCantabria por las ma\u00f1anas\u201d. 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