{"id":4383,"date":"2019-05-06T05:58:06","date_gmt":"2019-05-06T05:58:06","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/06\/nos-sumamos-al-dia-internacional-de-la-osteogenesis-imperfecta\/"},"modified":"2019-05-06T05:58:06","modified_gmt":"2019-05-06T05:58:06","slug":"nos-sumamos-al-dia-internacional-de-la-osteogenesis-imperfecta","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/06\/nos-sumamos-al-dia-internacional-de-la-osteogenesis-imperfecta\/","title":{"rendered":"Nos sumamos al D\u00eda Internacional de la Osteog\u00e9nesis Imperfecta"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El 6 de mayo se celebra el D\u00eda Internacional de la Osteog\u00e9nesis Imperfecta con el fin de concienciar a la sociedad y revindicar una mayor inversi\u00f3n en la investigaci\u00f3n acerca de esta enfermedad poco frecuente, para conseguir un diagn\u00f3stico precoz y un tratamiento eficaz. Desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) nos sumamos a esta jornada para mostrar todo nuestro apoyo a los pacientes y familiares que cada d\u00eda luchan por sus derechos y trabajan por la visibilizaci\u00f3n de su enfermedad.<\/p>\n<p>En FEDER aplaudimos la labor que realizan a diario las entidades que constituyen el movimiento asociativo relacionado con esta patolog\u00eda como, la Asociaci\u00f3n Huesos de Cristal de Espa\u00f1a, Fundaci\u00f3n AHUCE, Asociaci\u00f3n Madrile\u00f1a de Osteog\u00e9nesis Imperfecta y la Asociaci\u00f3n Riojana de Enfermedades Raras, que trabajan con objetivos comunes como mejorar la calidad de vida de las m\u00e1s de 3.000 personas que conviven en Espa\u00f1a con esta enfermedad o reclamar a las autoridades una atenci\u00f3n especializada.<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">Fundaci\u00f3n AHUCE<\/span><\/span><\/p>\n<p>La Fundaci\u00f3n AHUCE anima a todas las personas a sumarse a este d\u00eda de solidaridad y esperanza, mostrando su apoyo en redes sociales a trav\u00e9s de una foto vistiendo de color amarillo y bajo las #D\u00edaMundialOI #Wishboneday #Osteog\u00e9nesisImperfecta<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">Asociaci\u00f3n Madrile\u00f1a de Osteog\u00e9nesis Imperfecta<\/span><\/span><\/p>\n<p>La entidad realiza una serie de actividades de sensibilizaci\u00f3n con motivo del D\u00eda Mundial, teniendo como objetivo llegar cada vez a m\u00e1s rincones del mundo. Durante esta jornada se llevar\u00e1 a cabo la iluminaci\u00f3n de monumentos emblem\u00e1ticos de la geograf\u00eda espa\u00f1ola para sensibilizar acerca de la enfermedad. Adem\u00e1s, desde la Asociaci\u00f3n animan a todo el mundo a realizarse una foto abraz\u00e1ndose y posteriormente, colgarla con la etiqueta #losabrazosnofracturan<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">\u00bfQu\u00e9 es la Osteog\u00e9nesis Imperfecta?<\/span><\/span><\/p>\n<p>La Osteog\u00e9nesis Imperfecta (OI) comprende un grupo de enfermedades hereditarias, producidas por un desorden heterog\u00e9neo del tejido conectivo, que afecta a la producci\u00f3n del col\u00e1geno, principalmente del tipo 1.<\/p>\n<p>Es un trastorno gen\u00e9tico en el cual los huesos se fracturan con facilidad. Algunas veces, los huesos se fracturan sin un motivo aparente. La OI tambi\u00e9n puede causar m\u00fasculos d\u00e9biles, dientes quebradizos, una columna desviada y p\u00e9rdida del sentido del o\u00eddo.<\/p>\n<p>La causa es un defecto gen\u00e9tico que afecta la producci\u00f3n de col\u00e1geno, una prote\u00edna que ayuda a conservar huesos resistentes. Generalmente, el gen defectuoso se hereda de uno de los padres. Algunas veces, se debe a una mutaci\u00f3n, un cambio gen\u00e9tico aleatorio.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 06\/05\/2019<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12249-nos-sumamos-al-d%C3%ADa-internacional-de-la-osteog%C3%A9nesis-imperfecta\" target=\"_blank\" rel=\"noopener noreferrer\">Nos sumamos al D\u00eda Internacional de la Osteog\u00e9nesis Imperfecta<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 6 de mayo se celebra el D\u00eda Internacional de la Osteog\u00e9nesis Imperfecta con el fin de concienciar a la sociedad y revindicar una mayor inversi\u00f3n en la investigaci\u00f3n acerca de esta enfermedad poco frecuente, para conseguir un diagn\u00f3stico precoz y un tratamiento [&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-4383","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - 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