{"id":69369,"date":"2025-03-03T14:07:37","date_gmt":"2025-03-03T13:07:37","guid":{"rendered":"https:\/\/www.fundacioires.org\/?p=69369"},"modified":"2025-03-03T14:07:41","modified_gmt":"2025-03-03T13:07:41","slug":"unitat-i-visibilitat-per-a-les-malalties-minoritaries","status":"publish","type":"post","link":"https:\/\/www.fundacioires.org\/ca\/unitat-i-visibilitat-per-a-les-malalties-minoritaries\/","title":{"rendered":"Unitat i visibilitat per a les malalties minorit\u00e0ries: una jornada per a la participaci\u00f3 activa"},"content":{"rendered":"\n<p>El passat 28 de febrer, <strong>Dia Mundial de les Malalties Minorit\u00e0ries<\/strong>, l\u2019equip d\u2019adopcions de la fundaci\u00f3 IRES va assistir a la jornada anual que organitza la <strong>Fundaci\u00f3 Dr. Torrent-Farnell,<\/strong> un projecte formatiu i divulgatiu en salut, destinat a pacients amb malalties minorit\u00e0ries, cr\u00f2niques o vulnerables. El lema d\u2019aquesta 18a edici\u00f3 ha estat \u201cUnitat, visibilitat i participaci\u00f3 activa de la comunitat global\u201d.<\/p>\n\n\n\n<p>Al llarg d\u2019aquesta jornada s\u2019han comptat amb testimonis en primera persona, xerrades de professionals en relaci\u00f3 amb la IA, a les claus per una transici\u00f3 d\u2019\u00e8xit davant una malaltia minorit\u00e0ria. Tamb\u00e9 es va parlar de la IA com a pont entre professionals, recerca i pacients, aix\u00ed com el reconeixement de la traject\u00f2ria i comprom\u00eds d\u2019alguns professionals a favor de les malalties minorit\u00e0ries.<\/p>\n\n\n\n<p>La fundaci\u00f3 Torrent-Farnell s\u2019encarrega de millorar l\u2019acc\u00e9s a la formaci\u00f3 i la informaci\u00f3, el tractament, la cura i el suport de les persones que viuen afectades per una malaltia cr\u00f2nica, complexa, vulnerable o minorit\u00e0ria, per tal que el conjunt d\u2019afectats pugui participar activament tant amb professionals com en institucions.<\/p>\n\n\n\n<p>Aquesta tasca \u00e9s necess\u00e0ria, ja que, com explica la directora la Sra. Arbiol, una malaltia minorit\u00e0ria \u00e9s una malaltia greu i poc freq\u00fcent que afecta un nombre redu\u00eft de persones. Hi ha m\u00e9s de <strong>7.000 malalties minorit\u00e0ries<\/strong> que s\u2019estima que afecten <strong>5 de cada 10.000 persones<\/strong>. El fet que n\u2019hi hagi tantes, amb pocs pacients per a cadascuna, les fan poc conegudes tamb\u00e9 per als professionals de la medicina. S\u00f3n malalties greus o molt greus, cr\u00f2niques i generalment degeneratives. Al voltant del 80% s\u00f3n d\u2019origen gen\u00e8tic. Tot i que, en la majoria dels casos no existeix un tractament definitiu, s\u00ed que es pot aconseguir una millora en la qualitat i esperan\u00e7a de vida d\u2019aquests pacients.<\/p>\n\n\n\n<p>Al Servei d\u2019Adopcions d\u2019infants amb necessitats especials tenim alguns infants amb Malalties Minorit\u00e0ries i, per aquest motiu, comptem amb el suport i col\u00b7laboraci\u00f3 de la Fundaci\u00f3 Dr. Torrent-Farnell, on adrecem les nostres fam\u00edlies per afavorir que se sentin acompanyades i reconegudes en la seva traject\u00f2ria vital.&nbsp;<\/p>\n\n\n\n<p>Continuem buscant fam\u00edlies especials, si tu podries ser una d\u2019elles, posa\u2019t en contacte amb nosaltres a <strong>busquemfamiliesespecials.org<\/strong><\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>La Fundaci\u00f3 Dr. Torrent-Farnell reivindica la import\u00e0ncia de la recerca, la IA i el suport a pacients i fam\u00edlies en la seva 18a edici\u00f3.<\/p>\n","protected":false},"author":7,"featured_media":69366,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[19],"tags":[155],"class_list":["post-69369","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-ires-blog","tag-adopcions"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Unitat i visibilitat per a les malalties minorit\u00e0ries<\/title>\n<meta name=\"description\" content=\"La Fundaci\u00f3 Dr. Torrent-Farnell reivindica la import\u00e0ncia de la recerca, la IA i el suport a pacients i fam\u00edlies en la seva 18a edici\u00f3.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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