{"id":11223,"date":"2024-01-31T09:00:42","date_gmt":"2024-01-31T08:00:42","guid":{"rendered":"https:\/\/agora.xtec.cat\/insjvfoix\/?p=11223"},"modified":"2024-01-30T19:01:23","modified_gmt":"2024-01-30T18:01:23","slug":"malalties-minoritaries","status":"publish","type":"post","link":"https:\/\/agora.xtec.cat\/insjvfoix\/general\/malalties-minoritaries\/","title":{"rendered":"Malalties Minorit\u00e0ries"},"content":{"rendered":"<p align=\"justify\">Al desembre, l\u2019alumnat de 1r de batxillerat de Biomedicina i Biologia, vam rebre al ponent Jordi Cruz que ens va fer una xerrada titulada \u201c<b>Apropem-nos a les malalties minorit\u00e0ries<\/b>\u201d.<\/p>\n<p align=\"justify\">Jordi Cruz \u00e9s el patr\u00f3 de la fundaci\u00f3 FEDER ( Federaci\u00f3 Espanyola de Malalties Rares) i director de l\u2019associaci\u00f3 de MPS-Lisosomales, Fundador de l\u2019associaci\u00f3 de HPN (Hemoglobin\u00faria Parox\u00edstica Nocturna i malalties Hematol\u00f2giques rares) i fundador de la Casa de Sof\u00eda.<\/p>\n<p align=\"justify\">La seva filla Sof\u00eda estava afectada per una malaltia minorit\u00e0ria, la s\u00edndrome de Sanfilippo, malaltia gen\u00e8tica que provoca l\u2019abs\u00e8ncia d\u2019un enzim i aix\u00f2 causa l\u2019acumulaci\u00f3 dins les neurones de subst\u00e0ncies que deterioren progressivament el sistema nervi\u00f3s. Aquest fet provoca la mort prematura dels afectats, que no solen superar els vint anys de vida.<\/p>\n<p align=\"justify\">El Jordi ens va explicar com els pares amb fills afectats de malalties minorit\u00e0ries no tenien cap ajuda psicol\u00f2gica i econ\u00f2mica per ajudar els seus fills i per fer front a l\u2019acompanyament d\u2019una manera digna. Per aquest motiu va moure cel i terra per poder ajudar a qui pass\u00e9s per la mateixa situaci\u00f3 que va passar ell, fundant aix\u00ed la Casa de Sof\u00eda, que \u00e9s a Esplugues del Llobregat i liderada per l\u2019Hospital Sant Joan de D\u00e9u.<\/p>\n<p align=\"justify\"><a href=\"https:\/\/agora.xtec.cat\/insjvfoix\/wp-content\/uploads\/usu394\/2024\/01\/Malalties-minoritaries-1-1.pdf\">Malalties minorit\u00e0ries<\/a><\/p>\n<p style=\"text-align: right;\" align=\"justify\">M\u00aa Cinta Quintero, professora de Biologia.<\/p>\n<div id='gallery-1' class='gallery galleryid-11223 gallery-columns-3 gallery-size-thumbnail'><figure class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/agora.xtec.cat\/insjvfoix\/general\/malalties-minoritaries\/attachment\/image_50420737\/'><img loading=\"lazy\" decoding=\"async\" width=\"150\" height=\"150\" src=\"https:\/\/agora.xtec.cat\/insjvfoix\/wp-content\/uploads\/usu394\/2024\/01\/image_50420737-150x150.jpg\" class=\"attachment-thumbnail size-thumbnail\" alt=\"\" \/><\/a>\n\t\t\t<\/div><\/figure><figure class='gallery-item'>\n\t\t\t<div class='gallery-icon landscape'>\n\t\t\t\t<a href='https:\/\/agora.xtec.cat\/insjvfoix\/general\/malalties-minoritaries\/attachment\/image_50736897-2\/'><img loading=\"lazy\" decoding=\"async\" width=\"150\" height=\"150\" src=\"https:\/\/agora.xtec.cat\/insjvfoix\/wp-content\/uploads\/usu394\/2024\/01\/image_50736897-150x150.jpg\" class=\"attachment-thumbnail size-thumbnail\" alt=\"\" \/><\/a>\n\t\t\t<\/div><\/figure>\n\t\t<\/div>\n\n","protected":false},"excerpt":{"rendered":"<p>Al desembre, l\u2019alumnat de 1r de batxillerat de Biomedicina i Biologia, vam rebre al ponent Jordi Cruz que ens va fer una xerrada titulada \u201cApropem-nos a les malalties minorit\u00e0ries\u201d. Jordi Cruz \u00e9s el patr\u00f3 de la fundaci\u00f3 FEDER ( Federaci\u00f3 Espanyola de Malalties Rares) i director de l\u2019associaci\u00f3 de MPS-Lisosomales, Fundador de l\u2019associaci\u00f3 de HPN [&hellip;]<\/p>\n","protected":false},"author":287,"featured_media":11225,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"","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":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center 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