{"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-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-1 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>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>s\u00edndrome de Myhre<\/strong>, una enfermedad gen\u00e9tica rara e incurable y para la que actualmente no existe un tratamiento eficaz.<\/p>\n\n\n\n<p>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>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>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>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\"><time datetime=\"2026-02-26T11:55:36+01:00\"><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\/\">26 de febrero de 2026<\/a><\/time><\/div><\/div>\n\n<\/li><li class=\"wp-block-post post-419 post type-post status-publish format-standard hentry category-actividad tag-eguren-ugarte tag-rosali tag-sindrome-de-myhre\">\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\/2025\/10\/09\/eguren-ugarte-dedica-octubre-al-sindrome-de-myhre-una-oportunidad-solidaria\/\" target=\"_self\" >Eguren Ugarte dedica octubre al S\u00edndrome de Myhre \u2013 \u00a1Una oportunidad solidaria!<\/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=\"896\" height=\"1024\" data-id=\"422\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/10\/pack-rosali-1-1-896x1024.jpg\" alt=\"\" class=\"wp-image-422\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/10\/pack-rosali-1-1-896x1024.jpg 896w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/10\/pack-rosali-1-1-263x300.jpg 263w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/10\/pack-rosali-1-1-768x878.jpg 768w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/10\/pack-rosali-1-1-1344x1536.jpg 1344w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/10\/pack-rosali-1-1.jpg 1400w\" sizes=\"auto, (max-width: 896px) 100vw, 896px\" \/><\/figure>\n<\/figure>\n\n\n\n<p>Nos alegra enormemente compartir con vosotros una noticia muy especial.<\/p>\n\n\n\n<p>La&nbsp;<strong>bodega Eguren Ugarte<\/strong>, dentro de su iniciativa&nbsp;<strong>\u201c12 meses, 12 vinos, 12 causas\u201d<\/strong>, ha decidido dedicar el&nbsp;<strong>mes de octubre<\/strong>&nbsp;a&nbsp;<strong>R\u00f3sali<\/strong>, una ni\u00f1a con&nbsp;<strong>s\u00edndrome de Myhre<\/strong>, y apoyar as\u00ed a nuestra&nbsp;<strong>Asociaci\u00f3n S\u00edndrome de Myhre Espa\u00f1a (ASME)<\/strong>.<\/p>\n\n\n\n<p>Durante todo este mes,&nbsp;<strong>el 20% de lo recaudado<\/strong>&nbsp;con la venta del&nbsp;<strong>pack solidario de vino<\/strong>&nbsp;y en el&nbsp;<strong>evento de octubre<\/strong>&nbsp;ser\u00e1 donado \u00edntegramente a nuestra asociaci\u00f3n.<\/p>\n\n\n\n<p>Pod\u00e9is encontrar toda la informaci\u00f3n y adquirir el&nbsp;<strong>pack solidario<\/strong>&nbsp;en el siguiente enlace:<br><img decoding=\"async\" alt=\"\ud83d\udc49\" src=\"https:\/\/fonts.gstatic.com\/s\/e\/notoemoji\/16.0\/1f449\/72.png\">&nbsp;<a rel=\"noreferrer noopener\" href=\"https:\/\/egurenugarte.com\/producto\/pack-causa\/\" target=\"_blank\">https:\/\/egurenugarte.com\/producto\/pack-causa\/<\/a><\/p>\n\n\n\n<p>Queremos agradecer profundamente a\u00a0<strong>Eguren Ugarte<\/strong>\u00a0por su compromiso con las causas sociales y por ayudarnos a dar visibilidad al s\u00edndrome de Myhre.<\/p>\n\n\n\n<p>Cada gesto, cada acci\u00f3n y cada aportaci\u00f3n nos acerca un poco m\u00e1s a mejorar la calidad de vida de las personas y familias afectadas.<\/p>\n<\/div>\n\n<div style=\"margin-top:var(--wp--preset--spacing--40);\" class=\"wp-block-post-date has-small-font-size\"><time datetime=\"2025-10-09T12:19:31+02:00\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2025\/10\/09\/eguren-ugarte-dedica-octubre-al-sindrome-de-myhre-una-oportunidad-solidaria\/\">9 de octubre de 2025<\/a><\/time><\/div><\/div>\n\n<\/li><li class=\"wp-block-post post-377 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\/2025\/03\/17\/presentacion-de-la-asociacion-y-su-actividad-a-los-alumnos-de-4-de-psicologia-de-la-universidad-de-deusto\/\" target=\"_self\" >Presentaci\u00f3n de la asociaci\u00f3n y su actividad a los alumnos de 4\u00b0 de psicolog\u00eda de la Universidad de 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>El 12 de marzo tuvimos la oportunidad de conocer a los alumnos de 4\u00b0 de psicolog\u00eda de la Universidad de Deusto. <\/p>\n\n\n\n<p>En este encuentro pudimos exponer y profundizar en los desaf\u00edos, necesidades y realidades de las fam\u00edlias y pacientes con s\u00edndrome de Myhre. <\/p>\n\n\n\n<p>Tambi\u00e9n tuvimos la ocasi\u00f3n de presentar la colaboraci\u00f3n en el estudio Neuroemotion liderado por Ane y Josune, con el objetivo de elaborar una gu\u00eda cl\u00ednica sobre el neurodesarrollo de pacientes con s\u00edndrome de Myhre.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-default is-cropped wp-block-gallery-3 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=\"384\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0014-1-1024x768.jpg\" alt=\"\" class=\"wp-image-384\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0014-1-1024x768.jpg 1024w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0014-1-300x225.jpg 300w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0014-1-768x576.jpg 768w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0014-1-1536x1152.jpg 1536w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0014-1.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"893\" data-id=\"385\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0009-1024x893.jpg\" alt=\"\" class=\"wp-image-385\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0009-1024x893.jpg 1024w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0009-300x262.jpg 300w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0009-768x670.jpg 768w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0009-1536x1339.jpg 1536w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0009.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"386\" src=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0012-1-1024x768.jpg\" alt=\"\" class=\"wp-image-386\" srcset=\"https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0012-1-1024x768.jpg 1024w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0012-1-300x225.jpg 300w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0012-1-768x576.jpg 768w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0012-1-1536x1152.jpg 1536w, https:\/\/asmemyhre.es\/wp-content\/uploads\/2025\/03\/IMG-20250314-WA0012-1.jpg 1600w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/figure>\n\n\n\n<p>12 de marzo de 2025<\/p>\n<\/div>\n\n<div style=\"margin-top:var(--wp--preset--spacing--40);\" class=\"wp-block-post-date has-small-font-size\"><time datetime=\"2025-03-17T12:38:51+01:00\"><a href=\"https:\/\/asmemyhre.es\/index.php\/2025\/03\/17\/presentacion-de-la-asociacion-y-su-actividad-a-los-alumnos-de-4-de-psicologia-de-la-universidad-de-deusto\/\">17 de marzo de 2025<\/a><\/time><\/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-b2891da8 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 v27.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ 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