{"id":1906,"date":"2026-02-02T13:47:27","date_gmt":"2026-02-02T13:47:27","guid":{"rendered":"https:\/\/bridges4health.pt\/?post_type=evento&#038;p=1906"},"modified":"2026-06-02T13:36:37","modified_gmt":"2026-06-02T13:36:37","slug":"dia-doencas-raras-2026-papel-central-doentes-investigacao","status":"publish","type":"evento","link":"https:\/\/bridges4health.pt\/en\/eventos\/dia-doencas-raras-2026-papel-central-doentes-investigacao\/","title":{"rendered":"Rare Disease Day 2026: The central role of patients in research"},"content":{"rendered":"<p class=\"wp-block-paragraph\">As part of the Rare Disease Day 2026 celebrations, i3S held a commemorative afternoon event on February 27 dedicated to the central role of patients in research, reinforcing the importance of the active involvement of patient communities and their associations in the scientific process. This initiative, to which the Bridges4Health project adhered, aimed to create a space for meeting and dialogue between researchers, patients, and patient associations, highlighting the work carried out at i3S in this field which, despite its impact, remains largely unknown.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-2 is-cropped wp-block-gallery-1 is-layout-flex wp-block-gallery-is-layout-flex\">\n<figure class=\"wp-block-image size-large\"><img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"2350\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6398_02-1024x768.jpg\" alt=\"\" class=\"wp-image-2350\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6398_02-1024x768.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6398_02-300x225.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6398_02-768x576.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6398_02-1536x1152.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6398_02.jpg 1600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"2351\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6428_02-1024x768.jpg\" alt=\"\" class=\"wp-image-2351\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6428_02-1024x768.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6428_02-300x225.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6428_02-768x576.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6428_02-1536x1152.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6428_02.jpg 1600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" width=\"1024\" height=\"768\" data-id=\"2352\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6427_02-1024x768.jpg\" alt=\"\" class=\"wp-image-2352\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6427_02-1024x768.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6427_02-300x225.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6427_02-768x576.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6427_02-1536x1152.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6427_02.jpg 1600w\" sizes=\"(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=\"2349\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6404_02-1024x768.jpg\" alt=\"\" class=\"wp-image-2349\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6404_02-1024x768.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6404_02-300x225.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6404_02-768x576.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6404_02-1536x1152.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6404_02.jpg 1600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">The event was designed as a moment of sharing and reflection, featuring roundtable discussions, interactive activities, and opportunities for dialogue between science and society, with the goal of demonstrating the added value of involving patients and their associations in scientific research.<\/p>\n\n\n\n<figure class=\"wp-block-gallery has-nested-images columns-2 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=\"576\" data-id=\"2353\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6452_02-1024x576.jpg\" alt=\"\" class=\"wp-image-2353\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6452_02-1024x576.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6452_02-300x169.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6452_02-768x432.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6452_02-1536x864.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6452_02.jpg 1600w\" sizes=\"(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=\"576\" data-id=\"2348\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6507_02-1024x576.jpg\" alt=\"\" class=\"wp-image-2348\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6507_02-1024x576.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6507_02-300x169.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6507_02-768x432.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6507_02-1536x864.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6507_02.jpg 1600w\" sizes=\"(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=\"576\" data-id=\"2347\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6680_02-1024x576.jpg\" alt=\"\" class=\"wp-image-2347\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6680_02-1024x576.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6680_02-300x169.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6680_02-768x432.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6680_02-1536x864.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6680_02.jpg 1600w\" sizes=\"(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=\"576\" data-id=\"2345\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6891_02-1024x576.jpg\" alt=\"\" class=\"wp-image-2345\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6891_02-1024x576.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6891_02-300x169.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6891_02-768x432.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6891_02-1536x864.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6891_02.jpg 1600w\" sizes=\"(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=\"576\" data-id=\"2346\" src=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6809_02-1024x576.jpg\" alt=\"\" class=\"wp-image-2346\" srcset=\"https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6809_02-1024x576.jpg 1024w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6809_02-300x169.jpg 300w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6809_02-768x432.jpg 768w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6809_02-1536x864.jpg 1536w, https:\/\/bridges4health.pt\/wp-content\/uploads\/2026\/02\/B4H_Website_IMG_6809_02.jpg 1600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n<\/figure>\n\n\n\n<p class=\"wp-block-paragraph translation-block\"><strong>Target audience:<\/strong>  Patients and representatives of patient associations; i3S researchers; healthcare professionals.<\/p>\n\n\n\n<div class=\"wp-block-group is-nowrap is-layout-flex wp-container-core-group-is-layout-67bb2c04 wp-block-group-is-layout-flex\" style=\"padding-top:0;padding-right:0;padding-bottom:0;padding-left:0\">\n<p class=\"has-text-align-center has-palette-color-4-color has-palette-color-5-background-color has-text-color has-background has-link-color has-small-font-size wp-elements-5b8910b0869868ae649f06ffc558a6d3 wp-block-paragraph\" style=\"border-top-left-radius:500px;border-top-right-radius:500px;border-bottom-left-radius:500px;border-bottom-right-radius:500px;padding-top:var(--wp--preset--spacing--30);padding-right:var(--wp--preset--spacing--50);padding-bottom:var(--wp--preset--spacing--30);padding-left:var(--wp--preset--spacing--50)\"><strong><\/strong><\/p>\n\n\n\n<p class=\"has-text-align-center has-palette-color-4-color has-palette-color-5-background-color has-text-color has-background has-link-color has-small-font-size wp-elements-1e9aded3e758f04480f97fd921b99a7c wp-block-paragraph\" style=\"border-top-left-radius:500px;border-top-right-radius:500px;border-bottom-left-radius:500px;border-bottom-right-radius:500px;padding-top:var(--wp--preset--spacing--30);padding-right:var(--wp--preset--spacing--50);padding-bottom:var(--wp--preset--spacing--30);padding-left:var(--wp--preset--spacing--50)\"><strong><\/strong><\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p>No \u00e2mbito das comemora\u00e7\u00f5es do Dia das Doen\u00e7as Raras 2026, o i3S promoveu, no dia 27 e fevereiro, uma tarde comemorativa dedicada ao papel central dos doentes na investiga\u00e7\u00e3o, refor\u00e7ando a import\u00e2ncia do envolvimento ativo das comunidades de doentes e das suas associa\u00e7\u00f5es no processo cient\u00edfico. Esta iniciativa, \u00e0 qual o projeto Bridges4Health se associou, [&hellip;]<\/p>\n","protected":false},"featured_media":2216,"template":"","evento_cat":[140],"class_list":["post-1906","evento","type-evento","status-publish","has-post-thumbnail","hentry","evento_cat-externo"],"blocksy_meta":[],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Dia das Doen\u00e7as Raras 2026 | Bridges4Health<\/title>\n<meta name=\"description\" content=\"Evento Dia das Doen\u00e7as Raras 2026 dedicado ao papel central dos doentes na investiga\u00e7\u00e3o em Ci\u00eancias da Vida e da Sa\u00fade.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/bridges4health.pt\/en\/eventos\/dia-doencas-raras-2026-papel-central-doentes-investigacao\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" 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