{"id":7095,"date":"2021-04-28T13:17:47","date_gmt":"2021-04-28T13:17:47","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/28\/gracias-alde-por-darnos-la-oportunidad-de-participar-en-vuestra-jornada-sobre-distonia-muscular\/"},"modified":"2021-04-28T13:17:47","modified_gmt":"2021-04-28T13:17:47","slug":"gracias-alde-por-darnos-la-oportunidad-de-participar-en-vuestra-jornada-sobre-distonia-muscular","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/04\/28\/gracias-alde-por-darnos-la-oportunidad-de-participar-en-vuestra-jornada-sobre-distonia-muscular\/","title":{"rendered":"\u00a1Gracias ALDE por darnos la oportunidad de participar en vuestra Jornada sobre Diston\u00eda Muscular!"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El pasado 21 de noviembre, la Asociaci\u00f3n de Lucha contra la Diston\u00eda en Espa\u00f1a celebr\u00f3 su XIV Jornada sobre Diston\u00eda Muscular y en esta ocasi\u00f3n, desde FEDER estuvimos presentes a trav\u00e9s de la intervenci\u00f3n de Carmen Laborda, Psic\u00f3loga del Servicio de Atenci\u00f3n Psicol\u00f3gica de nuestra Federaci\u00f3n.<\/p>\n<p>\u00abQuiero dar las gracias a ALDE por la labor que hac\u00e9is, porque desarrollar estas Jornadas ya es un ejemplo de resiliencia\u00bb agradeci\u00f3 Carmen al inicio de su intervenci\u00f3n.<\/p>\n<p>Desde FEDER quisimos visibilizar el impacto sanitario y psicosocial de la COVID-19 en nuestro colectivo, ya que, seg\u00fan datos de la Rare Barometer Voices, el 91% de las familias sufriendo la paralizaci\u00f3n de la atenci\u00f3n a su patolog\u00eda en los primeros meses de pandemia.<\/p>\n<p>Adem\u00e1s, en este espacio, recordamos la importancia de la uni\u00f3n, poniendo en valor el apoyo mutuo entre personas con enfermedades raras, familias, movimiento asociativo y profesionales, para poder hacer frente a retos que presenta la enfermedad o sentimientos a los que se tienen que enfrentar, como la soledad.<\/p>\n<p>Por otra parte, trasladamos la importancia de la resiliencia, es decir, la capacidad de adaptaci\u00f3n ante la adversidad, los puntos fuertes de esta capacidad y tambi\u00e9n pusimos ejemplos para poder ejemplificarla para despu\u00e9s, explicar c\u00f3mo construirla.<\/p>\n<p>En esta ocasi\u00f3n tambi\u00e9n trasladamos la importancia del autocuidado personal tanto a nivel cognitivo, a nivel corporal y a nivel conductual. Para poder aterrizar ese autocuidado a la vida diaria, lo ejemplificamos a trav\u00e9s de un diario de actividades placenteras.<\/p>\n<p>Desde FEDER queremos dar las gracias a ALDE por darnos la oportunidad de ofrecer un espacio donde fortalecer nuestros lazos con el movimiento asociativo y de poder compartir y escuchar experiencias.<\/p>\n<p>\u00daltima actualizaci\u00f3n 28\/04\/2021<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/15266-%C2%A1gracias-alde-por-darnos-la-oportunidad-de-participar-en-vuestra-jornada-sobre-diston%C3%ADa-muscular\" target=\"_blank\" rel=\"noopener\">\u00a1Gracias ALDE por darnos la oportunidad de participar en vuestra Jornada sobre Diston\u00eda Muscular!<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El pasado 21 de noviembre, la Asociaci\u00f3n de Lucha contra la Diston\u00eda en Espa\u00f1a celebr\u00f3 su XIV Jornada sobre Diston\u00eda Muscular y en esta ocasi\u00f3n, desde FEDER estuvimos presentes a trav\u00e9s de la intervenci\u00f3n de Carmen Laborda, Psic\u00f3loga del Servicio de Atenci\u00f3n Psicol\u00f3gica [&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-7095","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 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u00a1Gracias ALDE por darnos la oportunidad de participar en vuestra Jornada sobre Diston\u00eda Muscular! 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