{"id":20524,"date":"2026-02-27T11:20:27","date_gmt":"2026-02-27T11:20:27","guid":{"rendered":"https:\/\/fundaciolaninetadelsulls.org\/?p=20524"},"modified":"2026-02-27T11:20:27","modified_gmt":"2026-02-27T11:20:27","slug":"19th-world-rare-disease-day-catalonia-2026-fundacio-nineta-dells-ulls","status":"publish","type":"post","link":"https:\/\/fundaciolaninetadelsulls.org\/en\/19th-world-rare-disease-day-catalonia-2026-fundacio-nineta-dells-ulls\/","title":{"rendered":"The 19th World Rare Disease Day in Catalonia was successfully held (26\/02\/2026)"},"content":{"rendered":"<p><img fetchpriority=\"high\" decoding=\"async\" class=\"alignnone size-medium wp-image-20519 aligncenter\" src=\"https:\/\/fundaciolaninetadelsulls.org\/wp-content\/uploads\/2026\/02\/Screenshot-2026-02-27-at-12-13-07-Instagram-212x300.png\" alt=\"jornada de les malalties minoritaries on la Fundaci\u00f3 La Nineta dels Ulls forma part del comit\u00e8 organitzador\" width=\"212\" height=\"300\" srcset=\"https:\/\/fundaciolaninetadelsulls.org\/wp-content\/uploads\/2026\/02\/Screenshot-2026-02-27-at-12-13-07-Instagram-212x300.png 212w, https:\/\/fundaciolaninetadelsulls.org\/wp-content\/uploads\/2026\/02\/Screenshot-2026-02-27-at-12-13-07-Instagram.png 603w\" sizes=\"(max-width: 212px) 100vw, 212px\" \/><\/p>\n<p data-start=\"297\" data-end=\"735\">The 19th edition of World Rare Disease Day in Catalonia, under the slogan <strong data-start=\"371\" data-end=\"402\">\u201cMore than you can imagine\u201d<\/strong>, <strong data-start=\"404\" data-end=\"431\">was held on 26 February<\/strong>, focusing on patients and their families, beyond diagnosis and treatment. The event was <strong data-start=\"520\" data-end=\"606\">organized by the organizing committee, which included Fundaci\u00f3 La Nineta dels Ulls<\/strong>, aiming to create a space where genuine patient participation in healthcare decisions could impact daily life and health policy.<\/p>\n<p data-start=\"737\" data-end=\"784\">\ud83d\udd39 <strong data-start=\"740\" data-end=\"782\">Key topics discussed during the event:<\/strong><\/p>\n<ul data-start=\"785\" data-end=\"1153\">\n<li data-section-id=\"ufnz4v\" data-start=\"785\" data-end=\"858\">\n<p data-start=\"787\" data-end=\"858\">Updates from the Ministry on rare diseases and patient participation.<\/p>\n<\/li>\n<li data-section-id=\"1gqhkj8\" data-start=\"859\" data-end=\"953\">\n<p data-start=\"861\" data-end=\"953\">The Royal Decree regulating patient participation: implications and practical application.<\/p>\n<\/li>\n<li data-section-id=\"iqbn3d\" data-start=\"954\" data-end=\"1027\">\n<p data-start=\"956\" data-end=\"1027\">Impact on health technology assessment and real-life decision-making.<\/p>\n<\/li>\n<li data-section-id=\"1ua00jd\" data-start=\"1028\" data-end=\"1083\">\n<p data-start=\"1030\" data-end=\"1083\">Updates on the #NationalStrategy for #RareDiseases.<\/p>\n<\/li>\n<li data-section-id=\"1kxr2bw\" data-start=\"1084\" data-end=\"1153\">\n<p data-start=\"1086\" data-end=\"1153\">First-hand patient testimonies: from data to personal experience.<\/p>\n<\/li>\n<\/ul>\n<p data-start=\"1155\" data-end=\"1346\">The event <strong data-start=\"1169\" data-end=\"1202\">was hosted by Elisabet Carnic\u00e9<\/strong>, offering reflections and debate on health equity and research, as well as experiences that helped promote fairer and more inclusive decisions.<\/p>\n<p data-start=\"1348\" data-end=\"1649\">\u2705 <strong data-start=\"1350\" data-end=\"1391\">Objectives achieved during the event:<\/strong><br data-start=\"1391\" data-end=\"1394\" \/>\u2014 Realities were made visible, reducing stigma around rare diseases.<br data-start=\"1462\" data-end=\"1465\" \/>\u2014 Patients\u2019 experience and knowledge were shared to guide better healthcare decisions.<\/p>\n<p data-start=\"1651\" data-end=\"1811\">The event <strong data-start=\"1661\" data-end=\"1721\">was a space of generosity, perseverance, and achievement<\/strong>, where the stories of patients and their families gave meaning to World Rare Disease Day.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The 19th edition of World Rare Disease Day in Catalonia, under the slogan \u201cMore than you can imagine\u201d, was held on 26 February, focusing on patients and their families, beyond diagnosis and treatment. The event was organized by the organizing committee, which included Fundaci\u00f3 La Nineta dels Ulls, aiming to create a space where genuine [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","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":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center 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