{"id":6501,"date":"2024-12-02T15:41:09","date_gmt":"2024-12-02T14:41:09","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?post_type=news&#038;p=6501"},"modified":"2024-12-02T15:41:09","modified_gmt":"2024-12-02T14:41:09","slug":"rare-genetic-conditions-photo-exhibition-at-the-santa-maria-ithaca-center-check-out-their-beautiful-initiative","status":"publish","type":"news","link":"https:\/\/ern-ithaca.eu\/es\/events-news\/news\/rare-genetic-conditions-photo-exhibition-at-the-santa-maria-ithaca-center-check-out-their-beautiful-initiative\/","title":{"rendered":"Rare Genetic Conditions Photo Exhibition at the Santa Maria ITHACA Center: check out their beautiful initiative!"},"content":{"rendered":"<p class=\"wp-block-paragraph\">Last November 15th, the Service of Medical Genetics that belongs to Unidade Local de Sa\u00fade Santa Maria, in Lisbon, Portugal, celebrated its 25th anniversary. The celebration included a lecture given by guest speaker Prof. Sofia Douzgou Houge and the vernissage of a photography exhibition.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">This photography exhibition entitled \u201c<strong>25 years, 25 faces &#8211; Rewriting the stripes<\/strong>\u201d was curated by elements of Service of Medical Genetics (SGM), including the two representatives of ULS Santa Maria in ERN-ITHACA (Dr. M\u00e1rcia Rodrigues and Dr. Raquel Gouveia Silva).<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1200\" height=\"1600\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0003.jpg\" alt=\"\" class=\"wp-image-6507\" style=\"width:727px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0003.jpg 1200w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0003-450x600.jpg 450w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0003-768x1024.jpg 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0003-1152x1536.jpg 1152w\" sizes=\"auto, (max-width: 1200px) 100vw, 1200px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The title of the exhibition arises from the concept that rare diseases are \u201c<strong>zebras<\/strong>\u201d. In Medicine, we are taught to think first about horses (\u201cwhen you hear hoof beats, think horses, not zebras\u201d), but in Genetics we frequently deal with the rare conditions, the \u201czebras\u201d. Each of the 25 photographs portrays a person with a genetic condition and aims to show that <strong>the \u201cPerson\u201d is not defined by their genetic disorder and \u201crewrites their own stripes\u201d<\/strong>, as a unique individual who is part of their family, community, school or work, celebrating individuality, equality and inclusion.The patients and families portrayed in the exhibition represent all the others that are part of the history of SGM.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1179\" height=\"871\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0001.jpg\" alt=\"\" class=\"wp-image-6505\" style=\"width:755px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0001.jpg 1179w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0001-600x443.jpg 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0001-768x567.jpg 768w\" sizes=\"auto, (max-width: 1179px) 100vw, 1179px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">This project emerged from an idea, which took shape thanks to true teamwork and the altruism of the very good people we met along the way, especially the photographer Jos\u00e9 Mata. We experienced moments of great communion with our patients and families during the photo shooting sessions. We shared life experiences, smiles, easy hugs and moments of complicity.<strong> It was a journey full of challenges and learning, which enriched us as people and which will forever stay with us<\/strong>.\u00a0The\u00a0exhibition was only possible thanks to the contribution of several people, who we acknowledge for their dedication to this project.\u00a0We would like to also thank ERN-ITHACA for supporting this event. But our most special &#8220;thank you&#8221; is directed to the <strong>patients and families<\/strong>, who generously accepted our challenge and have taught us so much. They are the soul of this project!<\/p>\n\n\n\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"1600\" height=\"1242\" src=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0000.jpg\" alt=\"\" class=\"wp-image-6504\" style=\"width:762px;height:auto\" srcset=\"https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0000.jpg 1600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0000-600x466.jpg 600w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0000-768x596.jpg 768w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0000-1536x1192.jpg 1536w, https:\/\/ern-ithaca.eu\/wp-content\/uploads\/2024\/12\/IMG-20241202-WA0000-1320x1025.jpg 1320w\" sizes=\"auto, (max-width: 1600px) 100vw, 1600px\" \/><\/figure>","protected":false},"excerpt":{"rendered":"<p>Last November 15th, the Service of Medical Genetics that belongs to Unidade Local de Sa\u00fade Santa Maria, in Lisbon, Portugal, celebrated its 25th anniversary. The celebration included a lecture given by guest speaker Prof. Sofia Douzgou Houge and the vernissage of a photography exhibition. This photography exhibition entitled \u201c25 years, 25 faces &#8211; Rewriting the [&hellip;]<\/p>\n","protected":false},"featured_media":6506,"template":"","categories":[],"tags":[],"class_list":["post-6501","news","type-news","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rare Genetic Conditions Photo Exhibition at the Santa Maria ITHACA Center: check out their beautiful initiative! - ERN ITHACA<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ern-ithaca.eu\/es\/events-news\/news\/rare-genetic-conditions-photo-exhibition-at-the-santa-maria-ithaca-center-check-out-their-beautiful-initiative\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare Genetic Conditions Photo Exhibition at the Santa Maria ITHACA Center: check out their beautiful initiative! - ERN ITHACA\" \/>\n<meta property=\"og:description\" content=\"Last November 15th, the Service of Medical Genetics that belongs to Unidade Local de Sa\u00fade Santa Maria, in Lisbon, Portugal, celebrated its 25th anniversary. The celebration included a lecture given by guest speaker Prof. Sofia Douzgou Houge and the vernissage of a photography exhibition. 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