{"id":7123,"date":"2021-05-06T06:55:07","date_gmt":"2021-05-06T06:55:07","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/05\/06\/nos-unimos-al-dia-internacional-de-la-osteogenesis-imperfecta\/"},"modified":"2021-05-06T06:55:07","modified_gmt":"2021-05-06T06:55:07","slug":"nos-unimos-al-dia-internacional-de-la-osteogenesis-imperfecta","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/05\/06\/nos-unimos-al-dia-internacional-de-la-osteogenesis-imperfecta\/","title":{"rendered":"Nos unimos 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>&nbsp;<\/p>\n<p>La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma al D\u00eda Internacional de la Osteog\u00e9nesis Imperfecta, que se celebra hoy, para fomentar la concienciaci\u00f3n sobre esta patolog\u00eda poco frecuente e impulsar la mejora de la calidad de vida de las personas que conviven con esta patolog\u00eda y la de sus familias.<\/p>\n<p>La Osteog\u00e9nesis Imperfecta es una enfermedad cong\u00e9nita que se caracteriza por una formaci\u00f3n inadecuada del tejido \u00f3seo. Los huesos de los pacientes son muy fr\u00e1giles y se fracturan con m\u00e1s facilidad. Adem\u00e1s, existen manifestaciones, como baja estatura, problemas respiratorios, musculatura d\u00e9bil, p\u00e9rdida de audici\u00f3n, problemas de visi\u00f3n, escoliosis y dolor cr\u00f3nico.<\/p>\n<p>\u201cA trav\u00e9s de esta jornada se quiere sensibilizar a la sociedad y fomentar el conocimiento sobre la Osteog\u00e9nesis Imperfecta. Por esta raz\u00f3n, desde FEDER queremos sumarnos a este d\u00eda para apoyar estos objetivos y trasladar nuestra fuerza a las personas que conviven con estas patolog\u00edas, a sus familias y al tejido asociativo\u201d afirma Juan Carri\u00f3n, presidente de FEDER y su Fundaci\u00f3n.<\/p>\n<p>Adem\u00e1s, desde la Federaci\u00f3n quieren reconocer el trabajo del tejido asociativo que focalizan sus esfuerzos en garantizar el bienestar del colectivo, informando sobre la Osteog\u00e9nesis Imperfecta, defendiendo los derechos de los pacientes y sus familias, participando en iniciativas de cooperaci\u00f3n internacional y financiando proyectos de investigaci\u00f3n. Todo ello, es gracias a entidades como la Asociaci\u00f3n Nacional de Huesos de Cristal (AHUCE), Fundaci\u00f3n AHUCE y la Asociaci\u00f3n Madrile\u00f1a de Osteog\u00e9nesis Imperfecta (AMOI).<\/p>\n<p>La Fundaci\u00f3n AHUCE organiza varias actividades de concienciaci\u00f3n vinculadas a estas jornadas, como una serie de entrevistas en directo con personas con Osteog\u00e9nesis Imperfecta, la iluminaci\u00f3n de edificios emblem\u00e1ticos en varias partes de Espa\u00f1a, una presentaci\u00f3n destinada a comunidad educativa para facilitar recursos y actividades sobre esta patolog\u00eda y realizar\u00e1n una reuni\u00f3n online para celebrar esta jornada.<\/p>\n<p>\u00daltima actualizaci\u00f3n 06\/05\/2021<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15296-nos-unimos-al-d%C3%ADa-internacional-de-la-osteog%C3%A9nesis-imperfecta\" target=\"_blank\" rel=\"noopener\">Nos unimos 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: &nbsp; La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma al D\u00eda Internacional de la Osteog\u00e9nesis Imperfecta, que se celebra hoy, para fomentar la concienciaci\u00f3n sobre esta patolog\u00eda poco frecuente e impulsar la mejora de la calidad de vida de las personas que [&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-7123","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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