{"id":439,"date":"2026-07-22T16:09:31","date_gmt":"2026-07-22T14:09:31","guid":{"rendered":"https:\/\/asmemyhre.es\/?p=439"},"modified":"2026-07-22T16:12:42","modified_gmt":"2026-07-22T14:12:42","slug":"una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto","status":"publish","type":"post","link":"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\/","title":{"rendered":"Una jornada para\u00a0dar visibilidad al\u00a0S\u00edndrome de Myhre\u00a0en la Universidad\u00a0de Deusto"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><strong>El encuentro reuni\u00f3\u00a0al alumnado de\u00a0Psicolog\u00eda del Desarrollo\u00a0y del Doble\u00a0Grado en Educaci\u00f3n\u00a0Social y Trabajo\u00a0Social para conocer\u00a0de cerca la\u00a0realidad de esta\u00a0enfermedad rara y\u00a0reflexionar sobre la\u00a0importancia del acompa\u00f1amiento\u00a0integral a las\u00a0personas afectadas y\u00a0sus familias.<\/strong><\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"581\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260722-WA0003-1024x581.jpg\" alt=\"\" class=\"wp-image-440\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260722-WA0003-1024x581.jpg 1024w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260722-WA0003-300x170.jpg 300w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260722-WA0003-768x436.jpg 768w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260722-WA0003-1536x872.jpg 1536w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260722-WA0003.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">El pasado 18&nbsp;de mayo tuvimos el privilegio&nbsp;de participar en&nbsp;una jornada muy&nbsp;especial en la&nbsp;Universidad de Deusto, en Donostia-San&nbsp;Sebasti\u00e1n, junto al&nbsp;alumnado de 1.\u00ba de Psicolog\u00eda&nbsp;del Desarrollo&nbsp;y del&nbsp;Doble Grado en&nbsp;Educaci\u00f3n Social y&nbsp;Trabajo Social.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Fue una oportunidad\u00a0\u00fanica para acercar\u00a0la realidad del\u00a0<strong><a href=\"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/hipatia-fuhem-recauda-1-000-euros-para-apoyar-la-investigacion-del-sindrome-de-myhre\/\">S\u00edndrome de Myhre<\/a><\/strong>\u00a0a quienes, en\u00a0el futuro, desempe\u00f1ar\u00e1n\u00a0un papel clave\u00a0en el acompa\u00f1amiento\u00a0y la atenci\u00f3n\u00a0a personas y\u00a0familias. Durante la\u00a0sesi\u00f3n compartimos qu\u00e9\u00a0es esta enfermedad\u00a0rara, c\u00f3mo afecta\u00a0al d\u00eda a\u00a0d\u00eda de quienes\u00a0conviven con ella\u00a0y cu\u00e1les son\u00a0los desaf\u00edos, necesidades\u00a0y aprendizajes que\u00a0acompa\u00f1an este camino.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La jornada permiti\u00f3&nbsp;generar un espacio&nbsp;de di\u00e1logo&nbsp;y reflexi\u00f3n sobre&nbsp;la importancia del&nbsp;apoyo psicol\u00f3gico, social&nbsp;y humano. M\u00e1s&nbsp;all\u00e1 del diagn\u00f3stico,&nbsp;hablamos del&nbsp;valor de&nbsp;la escucha, la&nbsp;empat\u00eda y la&nbsp;comprensi\u00f3n como pilares&nbsp;fundamentales para mejorar&nbsp;la calidad de&nbsp;vida de las&nbsp;personas afectadas y&nbsp;de sus familias.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Queremos expresar nuestro&nbsp;m\u00e1s sincero agradecimiento&nbsp;al equipo de&nbsp;<strong>Deusto NeuroEmotion<\/strong>&nbsp;por invitarnos y&nbsp;ofrecernos este espacio&nbsp;de sensibilizaci\u00f3n y&nbsp;aprendizaje. Tambi\u00e9n queremos&nbsp;agradecer especialmente&nbsp;a&nbsp;<strong>Magdalena<\/strong>&nbsp;su implicaci\u00f3n para&nbsp;hacer posible este&nbsp;encuentro y su&nbsp;firme compromiso con&nbsp;la visibilidad del&nbsp;S\u00edndrome de Myhre.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Desde la Asociaci\u00f3n\u00a0seguiremos trabajando para\u00a0impulsar la investigaci\u00f3n, promover el conocimiento\u00a0y dar visibilidad\u00a0al <strong>S\u00edndrome de\u00a0Myhre<\/strong>, convencidos de\u00a0que cada conversaci\u00f3n, cada experiencia compartida\u00a0y cada persona\u00a0sensibilizada representan\u00a0un paso m\u00e1s\u00a0hacia una sociedad\u00a0m\u00e1s informada, emp\u00e1tica\u00a0e inclusiva.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El encuentro reuni\u00f3\u00a0al alumnado de\u00a0Psicolog\u00eda del Desarrollo\u00a0y del Doble\u00a0Grado en Educaci\u00f3n\u00a0Social y Trabajo\u00a0Social para conocer\u00a0de cerca la\u00a0realidad de esta\u00a0enfermedad rara y\u00a0reflexionar sobre la\u00a0importancia del acompa\u00f1amiento\u00a0integral a las\u00a0personas afectadas y\u00a0sus familias. El pasado 18&nbsp;de mayo tuvimos el privilegio&nbsp;de participar en&nbsp;una jornada muy&nbsp;especial en la&nbsp;Universidad de Deusto, en Donostia-San&nbsp;Sebasti\u00e1n, junto al&nbsp;alumnado de 1.\u00ba de Psicolog\u00eda&nbsp;del Desarrollo&nbsp;y del&nbsp;Doble [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[22],"tags":[],"class_list":["post-439","post","type-post","status-publish","format-standard","hentry","category-actividad"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Una jornada para\u00a0dar visibilidad al\u00a0S\u00edndrome de Myhre\u00a0en la Universidad\u00a0de Deusto - ASME<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Una jornada para\u00a0dar visibilidad al\u00a0S\u00edndrome de Myhre\u00a0en la Universidad\u00a0de Deusto - ASME\" \/>\n<meta property=\"og:description\" content=\"El encuentro reuni\u00f3\u00a0al alumnado de\u00a0Psicolog\u00eda del Desarrollo\u00a0y del Doble\u00a0Grado en Educaci\u00f3n\u00a0Social y Trabajo\u00a0Social para conocer\u00a0de cerca la\u00a0realidad de esta\u00a0enfermedad rara y\u00a0reflexionar sobre la\u00a0importancia del acompa\u00f1amiento\u00a0integral a las\u00a0personas afectadas y\u00a0sus familias. El pasado 18&nbsp;de mayo tuvimos el privilegio&nbsp;de participar en&nbsp;una jornada muy&nbsp;especial en la&nbsp;Universidad de Deusto, en Donostia-San&nbsp;Sebasti\u00e1n, junto al&nbsp;alumnado de 1.\u00ba de Psicolog\u00eda&nbsp;del Desarrollo&nbsp;y del&nbsp;Doble [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\/\" \/>\n<meta property=\"og:site_name\" content=\"ASME\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/asme.myhre\" \/>\n<meta property=\"article:published_time\" content=\"2026-07-22T14:09:31+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-07-22T14:12:42+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260722-WA0003.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1600\" \/>\n\t<meta property=\"og:image:height\" content=\"908\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Laura\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Laura\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/asmemyhre.es\\\/index.php\\\/2026\\\/07\\\/22\\\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/asmemyhre.es\\\/index.php\\\/2026\\\/07\\\/22\\\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\\\/\"},\"author\":{\"name\":\"Laura\",\"@id\":\"https:\\\/\\\/asmemyhre.es\\\/#\\\/schema\\\/person\\\/b7cd8b353b73ce690f8a92ef1d62efcb\"},\"headline\":\"Una jornada para\u00a0dar visibilidad al\u00a0S\u00edndrome de Myhre\u00a0en la Universidad\u00a0de Deusto\",\"datePublished\":\"2026-07-22T14:09:31+00:00\",\"dateModified\":\"2026-07-22T14:12:42+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/asmemyhre.es\\\/index.php\\\/2026\\\/07\\\/22\\\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\\\/\"},\"wordCount\":383,\"commentCount\":0,\"publisher\":{\"@id\":\"https:\\\/\\\/asmemyhre.es\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/asmemyhre.es\\\/index.php\\\/2026\\\/07\\\/22\\\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/asmemyhre.es\\\/wp-content\\\/uploads\\\/2026\\\/07\\\/IMG-20260722-WA0003-1024x581.jpg\",\"articleSection\":[\"Actividad\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/asmemyhre.es\\\/index.php\\\/2026\\\/07\\\/22\\\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/asmemyhre.es\\\/index.php\\\/2026\\\/07\\\/22\\\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\\\/\",\"url\":\"https:\\\/\\\/asmemyhre.es\\\/index.php\\\/2026\\\/07\\\/22\\\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\\\/\",\"name\":\"Una jornada para\u00a0dar visibilidad al\u00a0S\u00edndrome de Myhre\u00a0en la Universidad\u00a0de Deusto - 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