{"id":93119,"date":"2026-01-02T15:27:43","date_gmt":"2026-01-02T20:27:43","guid":{"rendered":"https:\/\/www.curejm.org\/?page_id=93119"},"modified":"2026-01-28T13:26:27","modified_gmt":"2026-01-28T18:26:27","slug":"taller-de-narracion-para-la-defensa-de-causas-sociales","status":"publish","type":"page","link":"https:\/\/www.curejm.org\/es\/advocacy-storytelling-workshop\/","title":{"rendered":"Empoderamiento de los j\u00f3venes adultos con JM: Taller de defensa y narraci\u00f3n de historias"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong>Zoom virtual | 18 de enero de 2026, de 8:00 a 8:45 p. m., hora del Este<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/us02web.zoom.us\/meeting\/register\/FN9osIKmS-KX67AKvOMHyw\"><strong>Reg\u00edstrese aqu\u00ed<\/strong><\/a><\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img fetchpriority=\"high\" decoding=\"async\" width=\"600\" height=\"338\" src=\"https:\/\/www.curejm.org\/wp-content\/uploads\/auto-responders-1.jpg\" alt=\"\" class=\"wp-image-93338\" srcset=\"https:\/\/www.curejm.org\/wp-content\/uploads\/auto-responders-1.jpg 600w, https:\/\/www.curejm.org\/wp-content\/uploads\/auto-responders-1-500x282.jpg 500w, https:\/\/www.curejm.org\/wp-content\/uploads\/auto-responders-1-18x10.jpg 18w\" sizes=\"(max-width: 600px) 100vw, 600px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Cure JM lanza un nuevo taller virtual dise\u00f1ado para ayudar a los j\u00f3venes adultos con miositis juvenil (MJ) a aprender c\u00f3mo funciona la defensa de los derechos y c\u00f3mo las historias personales pueden influir en la investigaci\u00f3n, las pol\u00edticas y los debates del D\u00eda de las Enfermedades Raras.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">En esta sesi\u00f3n de Zoom de 45 minutos, los participantes aprender\u00e1n:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Qu\u00e9 significa la defensa de los derechos en lenguaje sencillo<br><\/li>\n\n\n\n<li>C\u00f3mo utilizan las voces de los pacientes los investigadores, los responsables pol\u00edticos y las organizaciones de defensa.<br><\/li>\n\n\n\n<li>C\u00f3mo elaborar una historia breve y eficaz para promover una causa (60-90 segundos)<br><\/li>\n\n\n\n<li>\u00bfQu\u00e9? <em>no<\/em> No hay nada de qu\u00e9 preocuparse: no se requiere experiencia m\u00e9dica, perfecci\u00f3n ni experiencia en hablar en p\u00fablico.<br><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Este es el <strong>solo se requiere capacitaci\u00f3n presencial<\/strong> para j\u00f3venes adultos que deseen participar en las iniciativas de promoci\u00f3n y narraci\u00f3n de historias de Cure JM con motivo del D\u00eda de las Enfermedades Raras.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>\u00bfQu\u00e9 sucede despu\u00e9s del taller?<\/strong><strong><br><\/strong> Se invitar\u00e1 a los participantes a enviar una breve historia de promoci\u00f3n en uno de estos dos formatos:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Historia escrita:<\/strong> 150-300 palabras<br><\/li>\n\n\n\n<li><strong>Historia en video:<\/strong> breve e informal, de 45 a 90 segundos<br><\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Las historias pueden utilizarse en Cure JM. <em>Voces de JM<\/em> folleto de promoci\u00f3n, conversaciones sobre el D\u00eda de las Enfermedades Raras e iniciativas opcionales de narraci\u00f3n digital. Todos los participantes revisar\u00e1n y aprobar\u00e1n su historia antes de que se comparta, y se ofrecer\u00e1 apoyo en forma de asesoramiento ligero si se desea.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>C\u00f3mo enviar tu historia:<br><\/strong>Las historias deben enviarse <strong><a href=\"https:\/\/forms.gle\/e4dykmmUQ3TUrekC8\">AQU\u00cd<\/a><\/strong> por <strong>2\/5\/26<\/strong>.<br>Se enviar\u00e1n indicaciones e instrucciones claras en un correo electr\u00f3nico de seguimiento despu\u00e9s del taller.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Virtual Zoom | January 18, 2026 at 8:00-8:45pm Eastern Register Here Cure JM is launching a new virtual workshop designed to help young adults with juvenile myositis (JM) learn how advocacy works and how personal stories can make an impact in research, policy, and Rare Disease Day conversations. In this 45-minute Zoom session, participants will [&hellip;]<\/p>\n","protected":false},"author":24,"featured_media":93337,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"both","_seopress_redirections_param":"","_seopress_redirections_type":301,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"footnotes":""},"class_list":["post-93119","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/pages\/93119","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/users\/24"}],"replies":[{"embeddable":true,"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/comments?post=93119"}],"version-history":[{"count":0,"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/pages\/93119\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/media\/93337"}],"wp:attachment":[{"href":"https:\/\/www.curejm.org\/es\/wp-json\/wp\/v2\/media?parent=93119"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}