{"id":7208,"date":"2021-05-25T10:01:04","date_gmt":"2021-05-25T10:01:04","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/05\/25\/participamos-en-la-jornada-osteogenesis-imperfecta-juntos-somos-mas-fuertes\/"},"modified":"2021-05-25T10:01:04","modified_gmt":"2021-05-25T10:01:04","slug":"participamos-en-la-jornada-osteogenesis-imperfecta-juntos-somos-mas-fuertes","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/05\/25\/participamos-en-la-jornada-osteogenesis-imperfecta-juntos-somos-mas-fuertes\/","title":{"rendered":"Participamos en la Jornada &#039;Osteog\u00e9nesis imperfecta: Juntos somos m\u00e1s fuertes&#039;"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Fuente: Centro CREER. El Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias (Creer), del Imserso, organiza el 27 de mayo la Jornada online \u00abOsteog\u00e9nesis Imperfecta: Juntos somos m\u00e1s fuertes\u00bb, en colaboraci\u00f3n con la Asociaci\u00f3n AHUCE, la Fundaci\u00f3n AHUCE y la Asociaci\u00f3n Madrile\u00f1a de Osteog\u00e9nesis Imperfecta (AMOI) y desde FEDER participaremos en esta jornada a trav\u00e9s de la representaci\u00f3n de Juan Carri\u00f3n, presidente de FEDER y su Fundaci\u00f3n.<\/p>\n<p>La jornada est\u00e1 dividida en tres mesas que aglutinan los objetivos de la jornada:<\/p>\n<p>Cooperaci\u00f3n internacional: es muy importante que el colectivo conozca los proyectos de cooperaci\u00f3n que se est\u00e1n realizando, as\u00ed como la importancia de que esto se lleve a cabo. Se dar\u00e1 a conocer el proyecto INNOVCare y su repercusi\u00f3n en la atenci\u00f3n integral, y el proyecto IMPACT, que se trata de una colaboraci\u00f3n entre la Fundaci\u00f3n Estadounidense de Osteog\u00e9nesis imperfectaAbre nueva ventana y MereoBioPharmaAbre nueva ventana.<\/p>\n<p>Atenci\u00f3n multidisciplinar: tres t\u00e9cnicos de las tres entidades de Osteog\u00e9nesis Imperfecta, abordaran la atenci\u00f3n multidisciplinar y especializada que se lleva a cabo con el colectivo de personas con OI y sus familias.<\/p>\n<p>Investigaci\u00f3n: se presentar\u00e1n dos proyectos que se llevan a cabo en diversos centros de investigaci\u00f3n que trabajan en red.<br \/>La jornada se llevar\u00e1 a cabo a partir de las 16:15 h. de la tarde para tener proyecci\u00f3n sobre Am\u00e9rica Latina. Para el colectivo que representan las asociaciones y la Fundaci\u00f3n de OI, es esencial que la jornada sea transcriba en directo, ya que uno de los s\u00edntomas cl\u00ednicos m\u00e1s frecuentes en la OI es la p\u00e9rdida de audici\u00f3n.<\/p>\n<p>El desarrollo \u00edntegro del programa podr\u00e1 ser seguido en directo, previa inscripci\u00f3n, por la plataforma Cisco Webex Meeting y en redes sociales con el hashtag #JuntosM\u00e1sFuertesOI.<\/p>\n<p>\u00daltima actualizaci\u00f3n 25\/05\/2021<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15415-participamos-en-la-jornada-osteog%C3%A9nesis-imperfecta-juntos-somos-m%C3%A1s-fuertes\" target=\"_blank\" rel=\"noopener\">Participamos en la Jornada &#039;Osteog\u00e9nesis imperfecta: Juntos somos m\u00e1s fuertes&#039;<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: Centro CREER. El Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias (Creer), del Imserso, organiza el 27 de mayo la Jornada online \u00abOsteog\u00e9nesis Imperfecta: Juntos somos m\u00e1s fuertes\u00bb, en colaboraci\u00f3n con la Asociaci\u00f3n AHUCE, la Fundaci\u00f3n [&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-7208","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Participamos en la Jornada &#039;Osteog\u00e9nesis imperfecta: Juntos somos m\u00e1s fuertes&#039; - 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\/2021\/05\/25\/participamos-en-la-jornada-osteogenesis-imperfecta-juntos-somos-mas-fuertes\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Participamos en la Jornada &#039;Osteog\u00e9nesis imperfecta: Juntos somos m\u00e1s fuertes&#039; - 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: Fuente: Centro CREER. 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