{"id":4558,"date":"2019-07-18T08:41:16","date_gmt":"2019-07-18T08:41:16","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/07\/18\/feder-y-creer-presentan-la-jornada-de-buenas-practicas-enfermedades-raras-un-desafio-global-un-desafio-integral\/"},"modified":"2019-07-18T08:41:16","modified_gmt":"2019-07-18T08:41:16","slug":"feder-y-creer-presentan-la-jornada-de-buenas-practicas-enfermedades-raras-un-desafio-global-un-desafio-integral","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/07\/18\/feder-y-creer-presentan-la-jornada-de-buenas-practicas-enfermedades-raras-un-desafio-global-un-desafio-integral\/","title":{"rendered":"FEDER y CREER presentan la Jornada de buenas pr\u00e1cticas: Enfermedades raras: Un desaf\u00edo global, un desaf\u00edo integral"},"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 organiza junto al Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias (CREER) de Burgos, dependiente del IMSERSO, la Jornada de buenas pr\u00e1cticas: Enfermedades raras: Un desaf\u00edo global, un desaf\u00edo integral, que se celebrar\u00e1 el 19 y 20 de septiembre.<\/p>\n<p>El objetivo de este encuentro es potenciar al m\u00e1ximo la participaci\u00f3n de las entidades para el intercambio de buenas pr\u00e1cticas&nbsp;con la mirada puesta a nivel nacional y mundial, ya que, como novedad, esta reuni\u00f3n se convierte en el primer encuentro internacional de la Federaci\u00f3n.&nbsp;<\/p>\n<p>Adem\u00e1s, este evento se enmarca dentro de la celebraci\u00f3n del XX aniversario del nacimiento de FEDER, tiempo en el que han estado trabajando junto al movimiento asociativo para ser la voz de las personas que conviven con una enfermedad rara o sin diagn\u00f3stico en Espa\u00f1a. Por otro lado, esta reuni\u00f3n tambi\u00e9n coincide con los 10 a\u00f1os desde la creaci\u00f3n del CREER.<\/p>\n<p>FEDER est\u00e1 formado por 361 entidades, que trabajan a diario para mejorar la calidad de vida de las personas que conviven con enfermedades poco frecuentes. Actividades como la jornada de buenas pr\u00e1cticas, son una oportunidad para que estas entidades dispongan de herramientas y de esta forma, abordar las enfermedades poco frecuentes desde una perspectiva m\u00e1s amplia.<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">Profundizando en la Jornada de buenas pr\u00e1cticas<\/span><\/span><\/p>\n<p>Este encuentro consigue reunir a entidades de pacientes y profesionales del \u00e1mbito nacional e internacional, los cuales, participar\u00e1n en mesas redondas donde se abrir\u00e1n cuatro paneles de discusi\u00f3n como, la promoci\u00f3n de la investigaci\u00f3n, los centros de atenci\u00f3n especializados, servicios de apoyo como l\u00edneas de ayuda, psicolog\u00eda y rehabilitaci\u00f3n, transformaci\u00f3n social e incidencia pol\u00edtica.<\/p>\n<p>Adem\u00e1s, los asistentes tendr\u00e1n la oportunidad de asistir a talleres en los que se intercambiar\u00e1 informaci\u00f3n para crear redes entre las entidades, en relaci\u00f3n a la defensa de derechos. Adem\u00e1s, se explicar\u00e1 c\u00f3mo es la puesta en marcha y el desarrollo de los Servicios de Atenci\u00f3n Directa en asociaciones.<\/p>\n<p>Tambi\u00e9n, se abrir\u00e1 un espacio para acercar los Centros de Excelencia y los Modelos de Atenci\u00f3n Directa, en esta ocasi\u00f3n, las entidades podr\u00e1n enviar sus propuestas en relaci\u00f3n a los servicios que desarrollan para compartir y acercar los mismos a las familias.<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">Empresas comprometidas por las Enfermedades Raras<\/span><\/span><\/p>\n<p>Esta d\u00e9cima edici\u00f3n se har\u00e1 realidad, gracias a la colaboraci\u00f3n de Sanofi Genzyme, ARC Racin, Fundaci\u00f3n Jes\u00fas Serra, MSD y Orphan Europe, las cuales, est\u00e1n comprometidas por estas patolog\u00edas con la que conviven m\u00e1s de tres millones de personas en Espa\u00f1a.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 18\/07\/2019<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12713-feder-y-creer-presentan-la-jornada-de-buenas-pr%C3%A1cticas-enfermedades-raras-un-desaf%C3%ADo-global%2C-un-desaf%C3%ADo-integral\" target=\"_blank\" rel=\"noopener noreferrer\">FEDER y CREER presentan la Jornada de buenas pr\u00e1cticas: Enfermedades raras: Un desaf\u00edo global, un desaf\u00edo integral<\/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 organiza junto al Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias (CREER) de Burgos, dependiente del IMSERSO, la Jornada de buenas pr\u00e1cticas: Enfermedades raras: Un desaf\u00edo global, un desaf\u00edo integral, [&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-4558","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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