{"id":35585,"date":"2021-06-22T12:36:23","date_gmt":"2021-06-22T10:36:23","guid":{"rendered":"https:\/\/www.laguiadepamplona.com\/actualidad\/?p=35585"},"modified":"2023-04-11T11:49:21","modified_gmt":"2023-04-11T09:49:21","slug":"la-fachada-de-la-casa-consistorial-se-iluminara-de-morado-para-concienciar-del-dia-internacional-del-sindrome-de-dravet","status":"publish","type":"post","link":"https:\/\/www.laguiadepamplona.com\/actualidad\/la-fachada-de-la-casa-consistorial-se-iluminara-de-morado-para-concienciar-del-dia-internacional-del-sindrome-de-dravet\/","title":{"rendered":"La fachada de la Casa Consistorial se iluminar\u00e1 de morado para concienciar del D\u00eda Internacional del S\u00edndrome de Dravet"},"content":{"rendered":"<h5>Esta enfermedad poco frecuente y de origen gen\u00e9tico afecta a uno de cada 16.000 nacimientos<\/h5>\n<p><!--more--><\/p>\n<p>La fachada de la Casa Consistorial se iluminar\u00e1 en morado este 23 de junio para unirse al m\u00e1s de un centenar de edificios de toda Espa\u00f1a que elegir\u00e1n ese color para concienciar a la ciudadan\u00eda sobre el S\u00edndrome de Dravet (Epilepsia Miocl\u00f3nica Severa de la Infancia). Esta dolencia de origen gen\u00e9tico comienza en el primer a\u00f1o de vida con crisis desencadenadas por fiebre que son seguidas por una epilepsia resistente a los f\u00e1rmacos. A partir del segundo a\u00f1o de vida este s\u00edndrome ocasiona graves retrasos en el desarrollo, tanto cognitivos, como motores y del habla, as\u00ed como problemas conductuales. La enfermedad afecta a uno de cada 16.000 nacimientos y tiene una tasa de mortalidad de alrededor del 15%.<\/p>\n<p><script async src=\"\/\/pagead2.googlesyndication.com\/pagead\/js\/adsbygoogle.js\"><\/script><br \/>\n<!-- Noticias La Guia de Pamplona --><br \/>\n<ins class=\"adsbygoogle\"\nstyle=\"display:block\"\ndata-ad-client=\"ca-pub-6943679897239327\"\ndata-ad-slot=\"7048180777\"\ndata-ad-format=\"auto\"><\/ins><br \/>\n<script>\n(adsbygoogle = window.adsbygoogle || []).push({});\n<\/script><\/p>\n<p>La sensibilizaci\u00f3n social es particularmente importante porque es una enfermedad minoritaria de las llamadas \u201cenfermedades raras\u201d y, de hecho, se estima que m\u00e1s del 75% de los afectados desconoce la enfermedad que padece o tiene un diagn\u00f3stico err\u00f3neo. Con el objetivo de dar m\u00e1s visibilidad a esta patolog\u00eda, RetoDravet, la plataforma de promoci\u00f3n y difusi\u00f3n de la enfermedad a trav\u00e9s del deporte solidario y otros eventos culturales y tiene ahora en marcha la campa\u00f1a Dorsal Solidario 2021.<\/p>\n<p>En paralelo la Fundaci\u00f3n S\u00edndrome de Dravet dedica tambi\u00e9n gran parte de sus recursos a financiar, ejecutar e implementar proyectos de investigaci\u00f3n junto con la Universidad de Tel-Aviv para generar nuevas herramientas cient\u00edficas de acceso abierto. Adem\u00e1s, realiza una Convocatoria de Proyectos Innovadores de Investigaci\u00f3n en Terapias Avanzadas a trav\u00e9s de la que en los pr\u00f3ximos a\u00f1os financiar\u00e1 dos proyectos cient\u00edficos adicionales.<\/p>\n<p>El D\u00eda Internacional del S\u00edndrome de Dravet fue creado en 2014 por la Fundaci\u00f3n S\u00edndrome de Dravet junto a otras organizaciones internacionales, por lo que este a\u00f1o se celebra su octava edici\u00f3n. Esta fundaci\u00f3n, creada en 2011, es una organizaci\u00f3n de familias de afectadas de car\u00e1cter nacional.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Esta enfermedad poco frecuente y de origen gen\u00e9tico afecta a uno de cada 16.000 nacimientos<\/p>\n","protected":false},"author":1,"featured_media":34691,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[],"class_list":["post-35585","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ayuntamiento-pamplona"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>La fachada de la Casa Consistorial se iluminar\u00e1 de morado para concienciar del D\u00eda Internacional del S\u00edndrome de Dravet<\/title>\n<meta name=\"description\" content=\"Esta enfermedad poco frecuente y de origen gen\u00e9tico 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