{"id":208085,"date":"2026-09-07T14:28:50","date_gmt":"2026-09-07T13:28:50","guid":{"rendered":"https:\/\/helloproject.es\/vigilancia\/celebrado-encuentro-familias-de-aspata5-en-el-creer\/"},"modified":"2026-09-07T14:28:50","modified_gmt":"2026-09-07T13:28:50","slug":"celebrado-encuentro-familias-de-aspata5-en-el-creer","status":"publish","type":"post","link":"https:\/\/helloproject.es\/vigilancia\/celebrado-encuentro-familias-de-aspata5-en-el-creer\/","title":{"rendered":"Celebrado Encuentro Familias de Aspata5 en el Creer"},"content":{"rendered":"<p>Del 1 al 6 de septiembre, el Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias (Creer), del <abbr title=\"Instituto de Mayores y Servicios Sociales\">Imserso<\/abbr>, ha acogido la celebraci\u00f3n del Encuentro de Familias de la Asociaci\u00f3n de Afectados por la mutaci\u00f3n del gen SPATA5, con el objetivo de favorecer el intercambio de experiencias, el apoyo mutuo y el acceso a recursos e informaci\u00f3n de inter\u00e9s.<\/p>\n<p>Durante seis d\u00edas, las familias se han reunido por primera vez en el <abbr title=\"Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias\">Creer<\/abbr> para participar en un amplio programa de actividades, combinando espacios de convivencia y trabajo asociativo con talleres y actividades.<\/p>\n<p>El programa ha incluido talleres de fisioterapia, psicolog\u00eda, terapia ocupacional y actividades sensoriales, desarrollados por profesionales del <abbr title=\"Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias\">Creer<\/abbr>. Adem\u00e1s, las familias han participado en un taller de m\u00fasica, en una sesi\u00f3n de terapia asistida con perros y en una charla online dedicada a los avances en la investigaci\u00f3n, con la intervenci\u00f3n de los investigadores del Centro Andaluz de Biolog\u00eda del Desarrollo y de la Universidad Pablo de Olavide, Jos\u00e9 Antonio S\u00e1nchez Alc\u00e1zar y David G\u00f3mez Fern\u00e1ndez.<\/p>\n<p>Asimismo, a lo largo de la semana las familias han disfrutado de diferentes espacios de trabajo para favorecer la puesta en com\u00fan de experiencias y el desarrollo de sus propias actividades.<\/p>\n<p>Actualmente, <abbr title=\"Asociaci\u00f3n de Afectados por la mutaci\u00f3n del gen SPATA5\">Aspata5<\/abbr> representa a siete familias espa\u00f1olas con hijos menores de edad, con edades comprendidas entre los 30 meses y los 13 a\u00f1os. Las personas afectadas por la mutaci\u00f3n del gen SPATA5 presentan diferentes manifestaciones cl\u00ednicas, entre las que se encuentran microcefalia, discapacidad intelectual, alteraciones del tono muscular, espasticidad, p\u00e9rdida auditiva neurosensorial, discapacidad visual cortical y crisis epil\u00e9pticas.<\/p>","protected":false},"excerpt":{"rendered":"<p>Del 1 al 6 de septiembre, el Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias (Creer), del Imserso, ha acogido la celebraci\u00f3n del Encuentro de Familias de la Asociaci\u00f3n de Afectados por la mutaci\u00f3n del [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":0,"comment_status":"","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[5],"tags":[],"class_list":["post-208085","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v20.9 (Yoast SEO v28.8) - 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