{"id":210097,"date":"2026-10-13T15:29:14","date_gmt":"2026-10-13T14:29:14","guid":{"rendered":"https:\/\/helloproject.es\/vigilancia\/celebrado-encuentro-adais5p-en-el-creer\/"},"modified":"2026-10-13T15:29:14","modified_gmt":"2026-10-13T14:29:14","slug":"celebrado-encuentro-adais5p-en-el-creer","status":"publish","type":"post","link":"https:\/\/helloproject.es\/vigilancia\/celebrado-encuentro-adais5p-en-el-creer\/","title":{"rendered":"Celebrado Encuentro Adais5p en el Creer"},"content":{"rendered":"<p>Del 9 al 11 de octubre, 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 Nacional de Familias de la Asociaci\u00f3n de Apoyo e Investigaci\u00f3n del S\u00edndrome 5p-.<\/p>\n<p data-pm-slice=\"1 1 []\">Durante tres d\u00edas, las familias participantes han compartido experiencias y han disfrutado de diferentes actividades orientadas a favorecer la convivencia, el bienestar y el apoyo mutuo.<\/p>\n<p>Uno de los ejes principales del encuentro ha sido la participaci\u00f3n en el estudio de investigaci\u00f3n \u00abBiomarcadores Faciales en Enfermedades Raras\u00bb, coordinada por la Dra. Aroa Casado Rodr\u00edguez, investigadora del Departamento de Cirug\u00eda y Especialidades M\u00e9dico-Quir\u00fargicas de la Facultad de Medicina y Ciencias de la Salud de la Universitat de Barcelona. La investigadora tambi\u00e9n ha impartido una charla para dar a conocer a las familias los objetivos y el desarrollo del estudio.<\/p>\n<p>El programa ha incluido actividades familiares como una sesi\u00f3n de terapia con animales y un taller de m\u00fasica. Asimismo, los hermanos y hermanas han participado en el taller \u00abEl mapa de quien soy\u00bb, dedicado al autoconocimiento y la expresi\u00f3n personal.<\/p>\n<p>El s\u00edndrome 5p-, tambi\u00e9n conocido como s\u00edndrome de Cri du Chat o s\u00edndrome del maullido de gato, es una enfermedad gen\u00e9tica rara causada por la p\u00e9rdida de material gen\u00e9tico del brazo corto del cromosoma 5. Entre sus caracter\u00edsticas pueden encontrarse el llanto agudo caracter\u00edstico, microcefalia, retraso en el crecimiento, discapacidad intelectual y dificultades en la comunicaci\u00f3n. Las personas con s\u00edndrome 5p- presentan tambi\u00e9n caracter\u00edsticas y capacidades diversas, como curiosidad, inter\u00e9s por aprender, sentido del humor y un car\u00e1cter afectivo y cari\u00f1oso.<\/p>","protected":false},"excerpt":{"rendered":"<p>Del 9 al 11 de octubre, 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 Nacional de Familias de la Asociaci\u00f3n de Apoyo e Investigaci\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-210097","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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