{"id":4675,"date":"2019-09-30T06:55:36","date_gmt":"2019-09-30T06:55:36","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/09\/30\/nos-solidarizamos-con-los-pacientes-con-hipertension-intracraneal-idiopatica-en-su-dia-mundial\/"},"modified":"2019-09-30T06:55:36","modified_gmt":"2019-09-30T06:55:36","slug":"nos-solidarizamos-con-los-pacientes-con-hipertension-intracraneal-idiopatica-en-su-dia-mundial","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/09\/30\/nos-solidarizamos-con-los-pacientes-con-hipertension-intracraneal-idiopatica-en-su-dia-mundial\/","title":{"rendered":"Nos solidarizamos con los pacientes con Hipertensi\u00f3n Intracraneal Idiop\u00e1tica en su D\u00eda Mundial"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El 30 de septiembre se celebra el D\u00eda Mundial de la Hipertensi\u00f3n Intracraneal Idiop\u00e1tica para lograr una mayor visibilidad de esta enfermedad poco frecuente y conseguir una mejor calidad de vida para pacientes y familiares. Por ello, desde FEDER nos unimos en esta jornada para sensibilizar acerca de esta patolog\u00eda y mostrar su apoyo a pacientes, familiares y entidades.<\/p>\n<p>La Hipertensi\u00f3n Intracraneal Idiop\u00e1tica es un trastorno neurol\u00f3gico, serio, que se caracteriza por un aumento de la presi\u00f3n del L\u00edquido Cefalorraqu\u00eddeo (LCR) dentro del cr\u00e1neo. Las manifestaciones cl\u00ednicas son fuertes dolores de cabeza, mareos, v\u00e9rtigos, nauseas, problemas cognitivos e incluso ceguera.<\/p>\n<p>Esta enfermedad poco frecuente tiene una prevalencia a nivel mundial de 5 de cada 100.000 personas.<\/p>\n<p>Desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras nos queremos solidarizar con las personas que tienen Hipertensi\u00f3n Intracraneal Idiop\u00e1tica y sus familiares. Adem\u00e1s, queremos reconocer el trabajo de las entidades del movimiento asociativo que trabajan para garantizar el bienestar de los pacientes.<\/p>\n<p>Las entidades del movimiento asociativo trabajan para garantizar los derechos de los pacientes y familiares, fomentan e impulsan la investigaci\u00f3n cl\u00ednica, organizan actividades de concienciaci\u00f3n para dar voz a esta enfermedad poco frecuente y a la realidad de las personas que conviven con ella. Adem\u00e1s, ofrecen apoyo y orientaci\u00f3n psicol\u00f3gica, social y legal. Todo esto es gracias a entidades como Asociaci\u00f3n de Enfermos y Familiares con Hipertensi\u00f3n Intracraneal de Espa\u00f1a (ADEFHIC).<\/p>\n<p><span style=\"font-size: 12pt\">Actividades por el D\u00eda Mundial<\/span><\/p>\n<p>La Asociaci\u00f3n de Enfermos y Familiares con Hipertensi\u00f3n Intracraneal de Espa\u00f1a tienen como objetivo crear una marea azul y verdes en las redes sociales para visibilizar esta enfermedad poco frecuente, por ello, animan a todo el mundo a subir una foto con un globo azul y verde, etiquetando a la entidad o envi\u00e1ndola por mensaje privado a su cuenta de Facebook o al email <a href=\"mailto:info@adefhic.org\">info@adefhic.org<\/a><a href=\"mailto:info@adefhic.org\"><\/a><\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 30\/09\/2019<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13010-nos-solidarizamos-con-los-pacientes-con-hipertensi%C3%B3n-intracraneal-idiop%C3%A1tica-en-su-d%C3%ADa-mundial\" target=\"_blank\" rel=\"noopener noreferrer\">Nos solidarizamos con los pacientes con Hipertensi\u00f3n Intracraneal Idiop\u00e1tica en su D\u00eda Mundial<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 30 de septiembre se celebra el D\u00eda Mundial de la Hipertensi\u00f3n Intracraneal Idiop\u00e1tica para lograr una mayor visibilidad de esta enfermedad poco frecuente y conseguir una mejor calidad de vida para pacientes y familiares. Por ello, desde FEDER nos unimos en esta [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4675","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos solidarizamos con los pacientes con Hipertensi\u00f3n Intracraneal Idiop\u00e1tica en su D\u00eda Mundial - 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\/2019\/09\/30\/nos-solidarizamos-con-los-pacientes-con-hipertension-intracraneal-idiopatica-en-su-dia-mundial\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos solidarizamos con los pacientes con Hipertensi\u00f3n Intracraneal Idiop\u00e1tica en su D\u00eda Mundial - 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: El 30 de septiembre se celebra el D\u00eda Mundial de la Hipertensi\u00f3n Intracraneal Idiop\u00e1tica para lograr una mayor visibilidad de esta enfermedad poco frecuente y conseguir una mejor calidad de vida para pacientes y familiares. 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