{"id":4525,"date":"2019-06-26T07:47:35","date_gmt":"2019-06-26T07:47:35","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/26\/nos-sumamos-al-dia-mundial-de-la-artrogriposis-multiple-congenita\/"},"modified":"2019-06-26T07:47:35","modified_gmt":"2019-06-26T07:47:35","slug":"nos-sumamos-al-dia-mundial-de-la-artrogriposis-multiple-congenita","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/06\/26\/nos-sumamos-al-dia-mundial-de-la-artrogriposis-multiple-congenita\/","title":{"rendered":"Nos sumamos al D\u00eda Mundial de la Artrogriposis M\u00faltiple Cong\u00e9nita"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El 30 de junio se celebra el D\u00eda Mundial de la Artrogriposis M\u00faltiple Cong\u00e9nita (AMC), una enfermedad poco frecuente caracterizada por contracturas cong\u00e9nitas en las extremidades, para concienciar a la sociedad sobre esta patolog\u00eda y por ello, desde FEDER nos queremos a esta jornada para apoyar a pacientes, familiares y entidades.<\/p>\n<p>La Artrogriposis M\u00faltiple Cong\u00e9nita se manifiesta al nacimiento como una limitaci\u00f3n del movimiento de las articulaciones de varias extremidades que, generalmente, no es progresiva.<\/p>\n<p>Esta enfermedad poco frecuente se asocia con una disminuci\u00f3n del movimiento fetal intrauterino que deriva, de manera secundaria, en contracturas.<\/p>\n<p>Los s\u00edntomas de la Artrogriposis M\u00faltiple Cong\u00e9nita var\u00edan de una persona a otra, sin embargo el car\u00e1cter com\u00fan es la rigidez en las articulaciones y la debilidad muscular. Las \u00e1reas m\u00e1s propensas a la falta de movimiento son los hombros, codos, mu\u00f1ecas, manos, caderas, rodillas y pies, puede afectar tambi\u00e9n a la mand\u00edbula.<\/p>\n<p>Desde FEDER queremos trasladar toda nuestra fuerza a los pacientes con Artrogriposis M\u00faltiple Cong\u00e9nita y a sus familiares. Adem\u00e1s, queremos reconocer el trabajo incansable que realiza la Asociaci\u00f3n AMC- Artrogriposis M\u00faltiple Cong\u00e9nita Espa\u00f1a.<\/p>\n<p>Entidades como la AMC-Artrogriposis M\u00faltiple Cong\u00e9nita Espa\u00f1a trabaja para mejorar la calidad de vida de las personas que conviven con esta enfermedad poco frecuente y la de sus familiares, a trav\u00e9s de la potenciaci\u00f3n de relaciones interpersonales entre pacientes y familiares, de la defensa de las necesidades comunes de las personas con AMC y la difusi\u00f3n de informaci\u00f3n sobre la patolog\u00eda a trav\u00e9s de actividades de visibilizaci\u00f3n, como las previstas para el D\u00eda Mundial de la AMC.<\/p>\n<p><span style=\"font-size: 12pt\">Actividades de concienciaci\u00f3n<\/span><\/p>\n<p>La AMC-Artrogriposis M\u00faltiple Cong\u00e9nita Espa\u00f1a organiza el 29 de junio en Barcelona, un encuentro de pacientes con AMC para visibilizar esta enfermedad poco frecuente y reforzar el movimiento asociativo ya que se potenciar\u00e1 la relaciones interpersonales entre el colectivo.<\/p>\n<p>Adem\u00e1s, ese mismo d\u00eda en Valencia se prepara una actividad divulgativa donde se proporcionar\u00e1 informaci\u00f3n sobre la patolog\u00eda a todo aquel interesado a trav\u00e9s de la mesa informativa que se instalar\u00e1 a partir de las 10:00 horas en el Ayuntamiento de Valencia. Por otro lado, esa noche, el consistorio se ba\u00f1ar\u00e1 de azul por la Artrogriposis M\u00faltiple Cong\u00e9nita.<\/p>\n<p>Por otro lado, la asociaci\u00f3n ha preparado un v\u00eddeo informativo sobre la enfermedad que se ha difundido en sus redes sociales a trav\u00e9s de las etiquetas #artrogriposis #nosomosrarossomosunicos y #diamundialartrogriposis y que puedes ver en el link que te dejamos vinculado a la noticia.&nbsp;<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 26\/06\/2019<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12627-nos-sumamos-al-d%C3%ADa-mundial-de-la-artrogriposis-m%C3%BAltiple-cong%C3%A9nita\" target=\"_blank\" rel=\"noopener noreferrer\">Nos sumamos al D\u00eda Mundial de la Artrogriposis M\u00faltiple Cong\u00e9nita<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 30 de junio se celebra el D\u00eda Mundial de la Artrogriposis M\u00faltiple Cong\u00e9nita (AMC), una enfermedad poco frecuente caracterizada por contracturas cong\u00e9nitas en las extremidades, para concienciar a la sociedad sobre esta patolog\u00eda y por ello, desde FEDER nos queremos a 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-4525","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 - 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