{"id":7048,"date":"2021-04-16T09:34:52","date_gmt":"2021-04-16T09:34:52","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/16\/nos-adherimos-al-dia-mundial-de-la-hemofilia\/"},"modified":"2021-04-16T09:34:52","modified_gmt":"2021-04-16T09:34:52","slug":"nos-adherimos-al-dia-mundial-de-la-hemofilia","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/16\/nos-adherimos-al-dia-mundial-de-la-hemofilia\/","title":{"rendered":"Nos adherimos al D\u00eda Mundial de la Hemofilia"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se une al D\u00eda Mundial de la Hemofilia que se celebra ma\u00f1ana con el objetivo de concienciar a la sociedad sobre el d\u00eda a d\u00eda de las personas que conviven con esta patolog\u00eda.<\/p>\n<p>\u201cDesde FEDER queremos trasladar todo nuestro apoyo y compromiso a las personas que conviven con Hemofilia. Adem\u00e1s, con motivo de esta jornada, aplaudimos la labor del tejido asociativo que se convierte en un pilar fundamental para el colectivo, ya que, trabajan para garantizar la calidad de vida de pacientes y familiares\u201d afirma Juan Carri\u00f3n, presidente de FEDER y su Fundaci\u00f3n.<\/p>\n<p>La hemofilia es un problema hemorr\u00e1gico. Las personas con hemofilia no sangran m\u00e1s r\u00e1pido de lo normal, pero pueden sangrar durante un per\u00edodo m\u00e1s prolongado. Su sangre no contiene una cantidad suficiente de factor de coagulaci\u00f3n. El factor de coagulaci\u00f3n es una prote\u00edna en la sangre que controla el sangrado.<\/p>\n<p>Entidades de pacientes, como la Asociaci\u00f3n Andaluza de Hemofilia, la Asociaci\u00f3n de Hemofilia de la Comunidad de Madrid, la Real Fundaci\u00f3n Victoria Eugenia y la Federaci\u00f3n Espa\u00f1ola de Hemofilia, trabajan para difundiendo informaci\u00f3n sobre la patolog\u00eda, ofreciendo asesoramiento al colectivo o defendiendo los derechos de los pacientes.<\/p>\n<p>El lema de este a\u00f1o de la Federaci\u00f3n Mundial de Hemofilia es \u201cAdaptarse al cambio: Preservar la atenci\u00f3n en un mundo nuevo\u201d. Todos los a\u00f1os, los puntos de referencia de todo el mundo se iluminan de rojo como parte de la campa\u00f1a \u201cLight It Up Red\u201d del D\u00eda mundial de la hemofilia.<\/p>\n<p>Por otra parte, desde FEDHEMO tambi\u00e9n anima a que la poblaci\u00f3n se vista con alguna prenda roja y que compartan una fotograf\u00eda en sus redes sociales, potenciando as\u00ed, la visibilidad del D\u00eda Mundial.<\/p>\n<p>\u00daltima actualizaci\u00f3n 16\/04\/2021<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15213-nos-adherimos-al-d%C3%ADa-mundial-de-la-hemofilia\" target=\"_blank\" rel=\"noopener\">Nos adherimos al D\u00eda Mundial de la Hemofilia<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se une al D\u00eda Mundial de la Hemofilia que se celebra ma\u00f1ana con el objetivo de concienciar a la sociedad sobre el d\u00eda a d\u00eda de las personas que conviven con esta patolog\u00eda. \u201cDesde FEDER queremos [&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-7048","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - 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