{"id":83348,"date":"2026-03-04T20:50:59","date_gmt":"2026-03-04T19:50:59","guid":{"rendered":"https:\/\/www.fundacioires.org\/?p=83348"},"modified":"2026-03-10T12:11:25","modified_gmt":"2026-03-10T11:11:25","slug":"posar-les-persones-al-centre-de-les-malalties-minoritaries","status":"publish","type":"post","link":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/","title":{"rendered":"M\u00e9s del que pots imaginar: posar les persones al centre de les malalties minorit\u00e0ries"},"content":{"rendered":"\n<p>Avui s\u2019ha celebrat la 19a Jornada del <strong>Dia Mundial de les Malalties Minorit\u00e0ries a Catalunya <\/strong>al\u00a0Recinte Modernista de Sant Pau, a Barcelona. Organitzada per la Plataforma de Malalties Minorit\u00e0ries, l\u2019edici\u00f3 d\u2019enguany porta per lema \u201c<em>M\u00e9s del que pots imaginar\u201d<\/em>\u00a0i posa el focus en l\u2019experi\u00e8ncia de les persones afectades i en la seva participaci\u00f3 activa dins del sistema sanitari.<\/p>\n\n\n\n<p>Aquesta commemoraci\u00f3 recorda que, tot i que les malalties minorit\u00e0ries afecten un nombre redu\u00eft de persones de manera individual, el seu impacte social \u00e9s profund. El lema d\u2019aquest any convida a anar m\u00e9s enll\u00e0 del diagn\u00f2stic i del tractament per situar al centre les persones i les seves fam\u00edlies, i per recordar que darrere de cada diagn\u00f2stic hi ha un nom, una hist\u00f2ria de vida, uns projectes i uns somnis.<\/p>\n\n\n\n<p>La participaci\u00f3 de les persones que conviuen amb una malaltia minorit\u00e0ria \u00e9s clau per avan\u00e7ar cap a un sistema de salut m\u00e9s equitatiu i adaptat a les necessitats reals. La seva implicaci\u00f3 en processos com l\u2019avaluaci\u00f3 de tecnologies sanit\u00e0ries, els comit\u00e8s d\u2019\u00e8tica, el disseny inicial d\u2019assajos cl\u00ednics o altres espais de decisi\u00f3 contribueix a promoure resolucions m\u00e9s informades i ajustades, i a facilitar un acc\u00e9s m\u00e9s just als tractaments.<\/p>\n\n\n\n<p>En aquest marc, el <strong>Servei d\u2019Adopcions d\u2019Infants amb Necessitats Especials<\/strong> ha participat en la jornada amb el testimoni d\u2019una fam\u00edlia que ha compartit la seva experi\u00e8ncia d\u2019adopci\u00f3. La seva intervenci\u00f3 ha posat en relleu la import\u00e0ncia de comptar amb fam\u00edlies compromeses i disposades a assumir la incertesa que acompanya l\u2019adopci\u00f3 d\u2019infants amb necessitats especials. Quan aquestes necessitats estan vinculades a una malaltia minorit\u00e0ria, es fa encara m\u00e9s evident la necessitat d\u2019una orientaci\u00f3 adequada i d\u2019un acompanyament especialitzat al llarg de tot el proc\u00e9s.<\/p>\n\n\n\n<p>La pres\u00e8ncia del Servei d\u2019Adopcions de la Fundaci\u00f3 IRES en aquest congr\u00e9s respon tamb\u00e9 a la voluntat de sensibilitzar la societat i d\u2019obrir noves vies per a aquelles fam\u00edlies que es plantegen l\u2019adopci\u00f3 d\u2019un infant amb una malaltia minorit\u00e0ria. El treball en xarxa entre entitats esdev\u00e9 fonamental per sumar esfor\u00e7os, compartir coneixement i donar una major visibilitat a aquesta realitat. Aquesta col\u00b7laboraci\u00f3 permet generar nous camins i refor\u00e7ar el missatge que tots els infants, independentment de la seva situaci\u00f3 m\u00e8dica o personal, tenen dret a cr\u00e9ixer en una fam\u00edlia.<\/p>\n\n\n\n<p>Seguim buscant persones i fam\u00edlies que puguin donar resposta als infants amb necessitats especials que encara n\u2019esperen una. Si pensen que podries ser una d\u2019elles contacta\u2019ns a trav\u00e9s de <a href=\"http:\/\/busquemfamiliesespecials.org\">busquemfamiliesespecials.org \u00a0<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>La 19a Jornada del Dia Mundial de les Malalties Minorit\u00e0ries a Catalunya reivindica la participaci\u00f3 activa de les persones afectades i dona visibilitat a l\u2019adopci\u00f3 d\u2019infants amb necessitats especials vinculades a malalties minorit\u00e0ries.<\/p>\n","protected":false},"author":7,"featured_media":83350,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[17],"tags":[],"class_list":["post-83348","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sense-categoria"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>M\u00e9s del que et pots imaginar jornada per les malalties minorit\u00e0ries<\/title>\n<meta name=\"description\" content=\"La 19a Jornada dona visibilitat a l\u2019adopci\u00f3 d\u2019infants amb necessitats especials vinculades a malalties minorit\u00e0ries.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"M\u00e9s del que et pots imaginar jornada per les malalties minorit\u00e0ries\" \/>\n<meta property=\"og:description\" content=\"La 19a Jornada dona visibilitat a l\u2019adopci\u00f3 d\u2019infants amb necessitats especials vinculades a malalties minorit\u00e0ries.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/\" \/>\n<meta property=\"og:site_name\" content=\"Fundaci\u00f3 IRES\" \/>\n<meta property=\"article:published_time\" content=\"2026-03-04T19:50:59+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-10T11:11:25+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.fundacioires.org\/wp-content\/uploads\/IGUALTAT-ACCESIBLE.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"628\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Fundaci\u00f3 IRES\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Fundaci\u00f3 IRES\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/\"},\"author\":{\"name\":\"Fundaci\u00f3 IRES\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#\\\/schema\\\/person\\\/160af843c565221ef4664a5c7000791c\"},\"headline\":\"M\u00e9s del que pots imaginar: posar les persones al centre de les malalties minorit\u00e0ries\",\"datePublished\":\"2026-03-04T19:50:59+00:00\",\"dateModified\":\"2026-03-10T11:11:25+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/\"},\"wordCount\":480,\"publisher\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/i0.wp.com\\\/www.fundacioires.org\\\/wp-content\\\/uploads\\\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1\",\"articleSection\":[\"Sense categoria\"],\"inLanguage\":\"ca-ES\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/\",\"url\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/\",\"name\":\"M\u00e9s del que et pots imaginar jornada per les malalties minorit\u00e0ries\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/i0.wp.com\\\/www.fundacioires.org\\\/wp-content\\\/uploads\\\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1\",\"datePublished\":\"2026-03-04T19:50:59+00:00\",\"dateModified\":\"2026-03-10T11:11:25+00:00\",\"description\":\"La 19a Jornada dona visibilitat a l\u2019adopci\u00f3 d\u2019infants amb necessitats especials vinculades a malalties minorit\u00e0ries.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/#breadcrumb\"},\"inLanguage\":\"ca-ES\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"ca-ES\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/#primaryimage\",\"url\":\"https:\\\/\\\/i0.wp.com\\\/www.fundacioires.org\\\/wp-content\\\/uploads\\\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1\",\"contentUrl\":\"https:\\\/\\\/i0.wp.com\\\/www.fundacioires.org\\\/wp-content\\\/uploads\\\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1\",\"width\":1200,\"height\":628},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/ca\\\/posar-les-persones-al-centre-de-les-malalties-minoritaries\\\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Portada\",\"item\":\"https:\\\/\\\/www.fundacioires.org\\\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"M\u00e9s del que pots imaginar: posar les persones al centre de les malalties minorit\u00e0ries\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#website\",\"url\":\"https:\\\/\\\/www.fundacioires.org\\\/\",\"name\":\"Fundaci\u00f3 IRES\",\"description\":\"\",\"publisher\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\\\/\\\/www.fundacioires.org\\\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"ca-ES\"},{\"@type\":\"Organization\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#organization\",\"name\":\"Fundanci\u00f3n IRES\",\"url\":\"https:\\\/\\\/www.fundacioires.org\\\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"ca-ES\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#\\\/schema\\\/logo\\\/image\\\/\",\"url\":\"https:\\\/\\\/i0.wp.com\\\/www.fundacioires.org\\\/wp-content\\\/uploads\\\/faviconIRES.png?fit=32%2C32&ssl=1\",\"contentUrl\":\"https:\\\/\\\/i0.wp.com\\\/www.fundacioires.org\\\/wp-content\\\/uploads\\\/faviconIRES.png?fit=32%2C32&ssl=1\",\"width\":32,\"height\":32,\"caption\":\"Fundanci\u00f3n IRES\"},\"image\":{\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#\\\/schema\\\/logo\\\/image\\\/\"}},{\"@type\":\"Person\",\"@id\":\"https:\\\/\\\/www.fundacioires.org\\\/#\\\/schema\\\/person\\\/160af843c565221ef4664a5c7000791c\",\"name\":\"Fundaci\u00f3 IRES\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"M\u00e9s del que et pots imaginar jornada per les malalties minorit\u00e0ries","description":"La 19a Jornada dona visibilitat a l\u2019adopci\u00f3 d\u2019infants amb necessitats especials vinculades a malalties minorit\u00e0ries.","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/","og_locale":"ca_ES","og_type":"article","og_title":"M\u00e9s del que et pots imaginar jornada per les malalties minorit\u00e0ries","og_description":"La 19a Jornada dona visibilitat a l\u2019adopci\u00f3 d\u2019infants amb necessitats especials vinculades a malalties minorit\u00e0ries.","og_url":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/","og_site_name":"Fundaci\u00f3 IRES","article_published_time":"2026-03-04T19:50:59+00:00","article_modified_time":"2026-03-10T11:11:25+00:00","og_image":[{"width":1200,"height":628,"url":"https:\/\/www.fundacioires.org\/wp-content\/uploads\/IGUALTAT-ACCESIBLE.png","type":"image\/png"}],"author":"Fundaci\u00f3 IRES","twitter_card":"summary_large_image","twitter_misc":{"Written by":"Fundaci\u00f3 IRES","Est. reading time":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/#article","isPartOf":{"@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/"},"author":{"name":"Fundaci\u00f3 IRES","@id":"https:\/\/www.fundacioires.org\/#\/schema\/person\/160af843c565221ef4664a5c7000791c"},"headline":"M\u00e9s del que pots imaginar: posar les persones al centre de les malalties minorit\u00e0ries","datePublished":"2026-03-04T19:50:59+00:00","dateModified":"2026-03-10T11:11:25+00:00","mainEntityOfPage":{"@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/"},"wordCount":480,"publisher":{"@id":"https:\/\/www.fundacioires.org\/#organization"},"image":{"@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/#primaryimage"},"thumbnailUrl":"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1","articleSection":["Sense categoria"],"inLanguage":"ca-ES"},{"@type":"WebPage","@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/","url":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/","name":"M\u00e9s del que et pots imaginar jornada per les malalties minorit\u00e0ries","isPartOf":{"@id":"https:\/\/www.fundacioires.org\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/#primaryimage"},"image":{"@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/#primaryimage"},"thumbnailUrl":"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1","datePublished":"2026-03-04T19:50:59+00:00","dateModified":"2026-03-10T11:11:25+00:00","description":"La 19a Jornada dona visibilitat a l\u2019adopci\u00f3 d\u2019infants amb necessitats especials vinculades a malalties minorit\u00e0ries.","breadcrumb":{"@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/#breadcrumb"},"inLanguage":"ca-ES","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/"]}]},{"@type":"ImageObject","inLanguage":"ca-ES","@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/#primaryimage","url":"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1","contentUrl":"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1","width":1200,"height":628},{"@type":"BreadcrumbList","@id":"https:\/\/www.fundacioires.org\/ca\/posar-les-persones-al-centre-de-les-malalties-minoritaries\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Portada","item":"https:\/\/www.fundacioires.org\/"},{"@type":"ListItem","position":2,"name":"M\u00e9s del que pots imaginar: posar les persones al centre de les malalties minorit\u00e0ries"}]},{"@type":"WebSite","@id":"https:\/\/www.fundacioires.org\/#website","url":"https:\/\/www.fundacioires.org\/","name":"Fundaci\u00f3 IRES","description":"","publisher":{"@id":"https:\/\/www.fundacioires.org\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.fundacioires.org\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"ca-ES"},{"@type":"Organization","@id":"https:\/\/www.fundacioires.org\/#organization","name":"Fundanci\u00f3n IRES","url":"https:\/\/www.fundacioires.org\/","logo":{"@type":"ImageObject","inLanguage":"ca-ES","@id":"https:\/\/www.fundacioires.org\/#\/schema\/logo\/image\/","url":"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/faviconIRES.png?fit=32%2C32&ssl=1","contentUrl":"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/faviconIRES.png?fit=32%2C32&ssl=1","width":32,"height":32,"caption":"Fundanci\u00f3n IRES"},"image":{"@id":"https:\/\/www.fundacioires.org\/#\/schema\/logo\/image\/"}},{"@type":"Person","@id":"https:\/\/www.fundacioires.org\/#\/schema\/person\/160af843c565221ef4664a5c7000791c","name":"Fundaci\u00f3 IRES"}]}},"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.fundacioires.org\/wp-content\/uploads\/IGUALTAT-ACCESIBLE.png?fit=1200%2C628&ssl=1","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/posts\/83348","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/comments?post=83348"}],"version-history":[{"count":1,"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/posts\/83348\/revisions"}],"predecessor-version":[{"id":83349,"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/posts\/83348\/revisions\/83349"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/media\/83350"}],"wp:attachment":[{"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/media?parent=83348"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/categories?post=83348"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.fundacioires.org\/ca\/wp-json\/wp\/v2\/tags?post=83348"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}