{"id":210468,"date":"2026-10-19T10:29:35","date_gmt":"2026-10-19T09:29:35","guid":{"rendered":"https:\/\/helloproject.es\/vigilancia\/celebrado-ii-encuentro-glucogenosis-creer\/"},"modified":"2026-10-19T10:29:35","modified_gmt":"2026-10-19T09:29:35","slug":"celebrado-ii-encuentro-glucogenosis-creer","status":"publish","type":"post","link":"https:\/\/helloproject.es\/vigilancia\/celebrado-ii-encuentro-glucogenosis-creer\/","title":{"rendered":"Celebrado II Encuentro Glucogenosis Creer"},"content":{"rendered":"Del 16 al 18 de octubre, el 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> en Burgos, ha acogido el II Encuentro de Familias de la Asociaci\u00f3n Espa\u00f1ola de Enfermos de Glucogenosis (AEEG), un espacio de convivencia, aprendizaje e intercambio de experiencias entre personas con glucogenosis y sus familias.\nEl programa ha incluido actividades cient\u00edficas, sesiones dirigidas a distintos grupos de edad y espacios para compartir vivencias e inquietudes.\u00a0\nEl s\u00e1bado tuvo lugar una jornada informativa con ponencias sobre los avances en terapia g\u00e9nica para las glucogenosis de tipo Ia y Ib y las posibilidades de edici\u00f3n gen\u00e9tica, a cargo del Dr. David Weinstein, as\u00ed como sobre la resonancia magn\u00e9tica card\u00edaca en la glucogenosis de tipo III, impartida por el Dr. Tom\u00e1s Pinos. Tambi\u00e9n se ha celebrado la actividad \u00abJugamos y aprendemos sobre todas las glucogenosis\u00bb, dirigida a ni\u00f1os y personas interesadas, para acercarse a estas enfermedades de una forma participativa.\nAdem\u00e1s, han tenido lugar sesiones espec\u00edficas para adolescentes y j\u00f3venes adultos con glucogenosis, as\u00ed como para familias con ni\u00f1os peque\u00f1os, centradas en compartir experiencias, preocupaciones y necesidades, y una actividad de introducci\u00f3n al acondicionamiento f\u00edsico y al estiramiento a trav\u00e9s del <em>barre<\/em>.\nComo parte de las actividades de convivencia, las familias han visitado el Museo de la Evoluci\u00f3n Humana de Burgos. El encuentro ha contado tambi\u00e9n con un espacio de trabajo para la asociaci\u00f3n y la celebraci\u00f3n de su asamblea de socios.\nEn esta edici\u00f3n, ha participado tambi\u00e9n la Asociaci\u00f3n Espa\u00f1ola de Enfermos de Pompe, que ha compartido sus experiencias con las familias asistentes. Asimismo, varios profesionales han contribuido al encuentro aportando sus conocimientos y experiencia.\nLas enfermedades de almacenamiento de gluc\u00f3geno, tambi\u00e9n conocidas como glucogenosis, son un grupo de trastornos gen\u00e9ticos que afectan a la capacidad del organismo para procesar y almacenar el gluc\u00f3geno, su principal reserva de energ\u00eda. Se producen cuando determinadas enzimas necesarias para su metabolismo faltan o no funcionan correctamente y pueden afectar a distintos \u00f3rganos y sistemas, especialmente al h\u00edgado y los m\u00fasculos.","protected":false},"excerpt":{"rendered":"<p>Del 16 al 18 de octubre, el Centro de Referencia Estatal de Atenci\u00f3n a Personas con Enfermedades Raras y sus Familias (Creer), del Imserso en Burgos, ha acogido el II Encuentro de Familias de la Asociaci\u00f3n Espa\u00f1ola de Enfermos de Glucogenosis (AEEG), un espacio de convivencia, aprendizaje e intercambio de experiencias entre personas con glucogenosis [&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-210468","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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