{"id":24,"date":"2025-02-07T16:38:10","date_gmt":"2025-02-07T15:38:10","guid":{"rendered":"http:\/\/localhost:8888\/?page_id=24"},"modified":"2025-02-21T15:52:03","modified_gmt":"2025-02-21T14:52:03","slug":"eventos-y-actividades","status":"publish","type":"page","link":"https:\/\/asmemyhre.es\/index.php\/eventos-y-actividades\/","title":{"rendered":"Eventos y Actividades"},"content":{"rendered":"\n<div class=\"wp-block-query alignfull is-layout-flow wp-block-query-is-layout-flow\"><ul class=\"alignfull wp-block-post-template is-layout-flow wp-block-post-template-is-layout-flow\"><li class=\"wp-block-post post-443 post type-post status-publish format-standard hentry category-actividad\">\n\n<div class=\"wp-block-group alignfull has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\" style=\"padding-top:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60)\">\n\n<h2 class=\"wp-block-post-title has-x-large-font-size\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/hipatia-fuhem-recauda-1-000-euros-para-apoyar-la-investigacion-del-sindrome-de-myhre\/\" target=\"_self\" >Hipatia FUHEM recauda\u00a01.000 euros\u00a0para\u00a0apoyar la investigaci\u00f3n\u00a0del S\u00edndrome de\u00a0Myhre<\/a><\/h2>\n\n<div class=\"entry-content alignfull wp-block-post-content has-medium-font-size has-global-padding is-layout-constrained wp-block-post-content-is-layout-constrained\">\n<p class=\"wp-block-paragraph\"><strong>La I Edici\u00f3n\u00a0del Mercadillo Solidario\u00a0de Hipatia FUHEM\u00a0destina su recaudaci\u00f3n\u00a0a la Asociaci\u00f3n\u00a0<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>\u00a0Espa\u00f1a (ASME).<\/strong><\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"768\" height=\"1024\" data-id=\"444\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0032-768x1024.jpg\" alt=\"\" class=\"wp-image-444\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0032-768x1024.jpg 768w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0032-225x300.jpg 225w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0032-1152x1536.jpg 1152w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0032.jpg 1200w\" sizes=\"auto, (max-width: 768px) 100vw, 768px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"445\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0031-1024x768.jpg\" alt=\"\" class=\"wp-image-445\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0031-1024x768.jpg 1024w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0031-300x225.jpg 300w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0031-768x576.jpg 768w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0031-1536x1152.jpg 1536w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/07\/IMG-20260721-WA0031.jpg 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">El pasado\u00a019 de junio, durante\u00a0la fiesta de\u00a0fin de curso, la comunidad educativa\u00a0de\u00a0<strong>Hipatia FUHEM<\/strong>\u00a0hizo entrega de\u00a0una donaci\u00f3n de\u00a0<strong>1.000 euros<\/strong>\u00a0a la\u00a0<strong>Asociaci\u00f3n S\u00edndrome de\u00a0Myhre Espa\u00f1a (ASME)<\/strong>, fruto de la\u00a0recaudaci\u00f3n obtenida en\u00a0la\u00a0<strong>I Edici\u00f3n del\u00a0Mercadillo Solidario<\/strong>.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Esta&nbsp;iniciativa ha sido&nbsp;posible gracias a&nbsp;la implicaci\u00f3n del&nbsp;alumnado, las familias y&nbsp;el profesorado, que&nbsp;demostraron una vez&nbsp;m\u00e1s que la&nbsp;educaci\u00f3n tambi\u00e9n es&nbsp;solidaridad, compromiso e inclusi\u00f3n.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En representaci\u00f3n de&nbsp;ASME, nuestra secretaria&nbsp;<strong>Rosa P\u00e9rez<\/strong>&nbsp;recibi\u00f3 la donaci\u00f3n&nbsp;acompa\u00f1ada de&nbsp;<strong>R\u00f3sali<\/strong>, alumna del&nbsp;centro y una&nbsp;de las ni\u00f1as&nbsp;que convive con&nbsp;el&nbsp;<strong>S\u00edndrome de Myhre<\/strong>&nbsp;en Espa\u00f1a. Su&nbsp;presencia hizo de&nbsp;este momento un&nbsp;acto especialmente emotivo&nbsp;y&nbsp;record\u00f3 que detr\u00e1s&nbsp;de cada proyecto&nbsp;de investigaci\u00f3n y&nbsp;de&nbsp;cada acci\u00f3n de&nbsp;sensibilizaci\u00f3n hay personas&nbsp;y familias que&nbsp;afrontan cada d\u00eda&nbsp;los desaf\u00edos&nbsp;de una&nbsp;enfermedad ultrarrara.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Esta aportaci\u00f3n nos permitir\u00e1&nbsp;seguir impulsando la&nbsp;investigaci\u00f3n sobre el&nbsp;<strong>S\u00edndrome de Myhre<\/strong>, apoyar a las&nbsp;familias y promover&nbsp;la visibilidad de las&nbsp;<strong>enfermedades raras<\/strong>, con el objetivo&nbsp;de&nbsp;avanzar hacia un&nbsp;mayor&nbsp;conocimiento y una&nbsp;mejor calidad de&nbsp;vida para&nbsp;las personas&nbsp;afectadas.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Desde ASME queremos&nbsp;expresar nuestro m\u00e1s&nbsp;sincero agradecimiento&nbsp;a toda la&nbsp;comunidad educativa de&nbsp;<strong>Hipatia FUHEM<\/strong>&nbsp;por su compromiso&nbsp;y generosidad.&nbsp;Iniciativas como este&nbsp;<strong>mercadillo solidario<\/strong>&nbsp;demuestran que cada&nbsp;gesto&nbsp;cuenta y que, cuando una comunidad&nbsp;se une, puede&nbsp;generar un&nbsp;impacto real.<\/p>\n<\/div>\n\n<div style=\"margin-top:var(--wp--preset--spacing--40)\" class=\"wp-block-post-date has-small-font-size\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/hipatia-fuhem-recauda-1-000-euros-para-apoyar-la-investigacion-del-sindrome-de-myhre\/\"><time datetime=\"2026-07-22T16:31:06+02:00\">22 de julio de 2026<\/time><\/a><\/div><\/div>\n\n<\/li><li class=\"wp-block-post post-439 post type-post status-publish format-standard hentry category-actividad\">\n\n<div class=\"wp-block-group alignfull has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\" style=\"padding-top:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60)\">\n\n<h2 class=\"wp-block-post-title has-x-large-font-size\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\/\" target=\"_self\" >Una jornada para\u00a0dar visibilidad al\u00a0S\u00edndrome de Myhre\u00a0en la Universidad\u00a0de Deusto<\/a><\/h2>\n\n<div class=\"entry-content alignfull wp-block-post-content has-medium-font-size has-global-padding is-layout-constrained wp-block-post-content-is-layout-constrained\">\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<\/div>\n\n<div style=\"margin-top:var(--wp--preset--spacing--40)\" class=\"wp-block-post-date has-small-font-size\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2026\/07\/22\/una-jornada-para-dar-visibilidad-al-sindrome-de-myhre-en-la-universidad-de-deusto\/\"><time datetime=\"2026-07-22T16:09:31+02:00\">22 de julio de 2026<\/time><\/a><\/div><\/div>\n\n<\/li><li class=\"wp-block-post post-430 post type-post status-publish format-standard hentry category-actividad\">\n\n<div class=\"wp-block-group alignfull has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\" style=\"padding-top:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60)\">\n\n<h2 class=\"wp-block-post-title has-x-large-font-size\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2026\/02\/26\/impulso-a-la-investigacion-en-sindrome-de-myhre-gracias-al-apoyo-de-la-fundacion-la-caixa\/\" target=\"_self\" >Impulso a la investigaci\u00f3n en s\u00edndrome de Myhre gracias al apoyo de la Fundaci\u00f3n \u201cla Caixa\u201d<\/a><\/h2>\n\n<div class=\"entry-content alignfull wp-block-post-content has-medium-font-size has-global-padding is-layout-constrained wp-block-post-content-is-layout-constrained\">\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-2 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"431\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/02\/1765645822739.png\" alt=\"\" class=\"wp-image-431\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/02\/1765645822739.png 1024w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/02\/1765645822739-300x225.png 300w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2026\/02\/1765645822739-768x576.png 768w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><figcaption class=\"wp-element-caption\">Miembros del equipo de investigaci\u00f3n y de la asociaci\u00f3n ASME en el acto de entrega de premios del 20 de noviembre de 2025<\/figcaption><\/figure>\n<\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">La <strong><a href=\"https:\/\/fundacionlacaixa.org\/es\/home\">Fundaci\u00f3n \u201cla Caixa\u201d<\/a><\/strong> ha decidido apoyar un proyecto de investigaci\u00f3n liderado por el <a href=\"https:\/\/www.irbbarcelona.org\/ca\">IRB Barcelona<\/a> centrado en el desarrollo de nuevos tratamientos para el <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>, una enfermedad gen\u00e9tica rara e incurable y para la que actualmente no existe un tratamiento eficaz.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El proyecto, dirigido por la <a href=\"https:\/\/www.irbbarcelona.org\/ca\/research\/maria-j-macias\">Dra. Mar\u00eda Mac\u00edas y su equipo<\/a> y en colaboraci\u00f3n con investigadores de la <a href=\"https:\/\/www.usc.gal\/es\" type=\"link\" id=\"https:\/\/www.usc.gal\/es\">Universidad de Santiago de Compostela (USC<\/a>), podr\u00e1 identificar nuevos compuestos capaces de actuar sobre los mecanismos moleculares causados por este s\u00edndrome. Estos compuestos se probar\u00e1n en modelos celulares, incluidas c\u00e9lulas derivadas de pacientes, para evaluar su eficacia y su potencial terap\u00e9utico como futuros tratamientos. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">El objetivo es <strong>desarrollar terapias efectivas<\/strong> que mejoren significativamente la calidad de vida de las personas afectadas y sus familias.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Desde la asociaci\u00f3n <strong>queremos agradecer<\/strong> a la Fundaci\u00f3n \u201cla Caixa\u201d y al equipo investigador <strong>su compromiso <\/strong>en el avance en investigaci\u00f3n de enfermedades poco frecuentes y que generan un impacto directo en los pacientes y en la sociedad. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Seguiremos atentos a los avances y os mantendremos informados.<\/p>\n<\/div>\n\n<div style=\"margin-top:var(--wp--preset--spacing--40)\" class=\"wp-block-post-date has-small-font-size\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2026\/02\/26\/impulso-a-la-investigacion-en-sindrome-de-myhre-gracias-al-apoyo-de-la-fundacion-la-caixa\/\"><time datetime=\"2026-02-26T11:55:36+01:00\">26 de febrero de 2026<\/time><\/a><\/div><\/div>\n\n<\/li><\/ul>\n\n\n<div class=\"wp-block-group has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\" style=\"padding-top:var(--wp--preset--spacing--60);padding-bottom:var(--wp--preset--spacing--60)\"><\/div>\n\n\n\n<div class=\"wp-block-group alignwide has-global-padding is-layout-constrained wp-block-group-is-layout-constrained\"><nav class=\"alignwide wp-block-query-pagination is-content-justification-space-between is-layout-flex wp-container-core-query-pagination-is-layout-4dea2dca wp-block-query-pagination-is-layout-flex\" aria-label=\"Paginaci\u00f3n\">\n\n\n<div class=\"wp-block-query-pagination-numbers\"><span aria-current=\"page\" class=\"page-numbers current\">1<\/span>\n<a class=\"page-numbers\" href=\"?query-40-page=2\">2<\/a><\/div>\n\n<a href=\"\/index.php\/wp-json\/wp\/v2\/pages\/24?query-40-page=2\" class=\"wp-block-query-pagination-next\">P\u00e1gina siguiente<span class='wp-block-query-pagination-next-arrow is-arrow-arrow' aria-hidden='true'>\u2192<\/span><\/a>\n<\/nav><\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-24","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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