{"id":2790,"date":"2025-03-02T22:54:47","date_gmt":"2025-03-02T21:54:47","guid":{"rendered":"https:\/\/www.fnofi.it\/ofi-umbria\/?p=2790"},"modified":"2025-03-02T22:56:16","modified_gmt":"2025-03-02T21:56:16","slug":"01-03-2025-evento-insieme-per-le-malattie-rare-ricerca-speranza-futuro","status":"publish","type":"post","link":"https:\/\/www.fnofi.it\/ofi-umbria\/01-03-2025-evento-insieme-per-le-malattie-rare-ricerca-speranza-futuro\/","title":{"rendered":"01.03.2025 &#8211; Evento &#8220;INSIEME PER LE MALATTIE RARE &#8211; Ricerca, Speranza, Futuro&#8221;"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Il 1\u00b0 marzo 2025, l&#8217;Hotel Fontebella di Assisi ha ospitato un&#8217;importante iniziativa web radiofonica organizzata dall&#8217;Associazione Rare Special Powers APS. Questo evento ha riunito esperti, ricercatori, rappresentanti degli Ordini delle Professioni Sanitarie e Associazioni di familiari, creando una preziosa piattaforma di confronto.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Durante l&#8217;incontro, sono stati analizzati lo stato attuale, le sfide da <a><\/a>affrontare e i programmi da attuare, con l&#8217;obiettivo di migliorare la cura, l&#8217;assistenza, la riabilitazione e il supporto sociale. L&#8217;intento finale \u00e8 garantire una qualit\u00e0 di vita migliore alle persone colpite e a coloro che se ne prendono cura.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La Presidente dell&#8217;Ordine dei Fisioterapisti dell&#8217;Umbria, Dott.ssa Daniela Gaburri, ha evidenziato l&#8217;importanza del ruolo dei fisioterapisti all&#8217;interno di un&#8217;\u00e9quipe multidisciplinare, essenziale per la gestione delle malattie rare, che presentano notevoli complessit\u00e0 e sono spesso causa di disabilit\u00e0. Grazie alle loro competenze specifiche, i fisioterapisti sono in grado di affrontare una vasta gamma di problematiche, spaziando da quelle articolari e muscolari a quelle neurologiche e respiratorie, che possono manifestarsi nelle diverse fasce di et\u00e0 delle persone affette da malattie rare.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La Dott.ssa Gaburri ha inoltre evidenziato la necessit\u00e0 di una formazione specifica, che integri necessariamente la formazione di base e coinvolga tutti gli esperti, tenendo in considerazione le opinioni e i valori dei pazienti e delle loro famiglie.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Un sentito ringraziamento a tutti gli intervenuti, all&#8217;Associazione RSP APS e alla Presidente Dott.ssa Eleonora Passeri, con la speranza di rafforzare la collaborazione attraverso futuri eventi e iniziative congiunte. <img loading=\"lazy\" decoding=\"async\" height=\"16\" width=\"16\" alt=\"\ud83d\udc99\" src=\"https:\/\/static.xx.fbcdn.net\/images\/emoji.php\/v9\/t6c\/1\/16\/1f499.png\"><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.facebook.com\/hashtag\/malattierare?__eep__=6&amp;__cft__[0]=AZVzooT3nbXcHY0SOPOLjNjXTbehsiY_EBnkgzL5_zjtSdX2DezB2PXkKROUIQGggCTpVkLW-_V3-fMlVdxx0qvieJMmtGeDOP7DgUElhPFVirOZ2oQMJBaS-wuPQfQVhHC3Ac3ohRpeQ8GMoEbito2nmT-jcM5n63yZt76-aKrnsp11i2Lva1ZXIFFPNG8twT8&amp;__tn__=*NK-R\">#MalattieRare<\/a> <a href=\"https:\/\/www.facebook.com\/hashtag\/ricerca?__eep__=6&amp;__cft__[0]=AZVzooT3nbXcHY0SOPOLjNjXTbehsiY_EBnkgzL5_zjtSdX2DezB2PXkKROUIQGggCTpVkLW-_V3-fMlVdxx0qvieJMmtGeDOP7DgUElhPFVirOZ2oQMJBaS-wuPQfQVhHC3Ac3ohRpeQ8GMoEbito2nmT-jcM5n63yZt76-aKrnsp11i2Lva1ZXIFFPNG8twT8&amp;__tn__=*NK-R\">#Ricerca<\/a> <a href=\"https:\/\/www.facebook.com\/hashtag\/speranza?__eep__=6&amp;__cft__[0]=AZVzooT3nbXcHY0SOPOLjNjXTbehsiY_EBnkgzL5_zjtSdX2DezB2PXkKROUIQGggCTpVkLW-_V3-fMlVdxx0qvieJMmtGeDOP7DgUElhPFVirOZ2oQMJBaS-wuPQfQVhHC3Ac3ohRpeQ8GMoEbito2nmT-jcM5n63yZt76-aKrnsp11i2Lva1ZXIFFPNG8twT8&amp;__tn__=*NK-R\">#Speranza<\/a> <a href=\"https:\/\/www.facebook.com\/hashtag\/futuro?__eep__=6&amp;__cft__[0]=AZVzooT3nbXcHY0SOPOLjNjXTbehsiY_EBnkgzL5_zjtSdX2DezB2PXkKROUIQGggCTpVkLW-_V3-fMlVdxx0qvieJMmtGeDOP7DgUElhPFVirOZ2oQMJBaS-wuPQfQVhHC3Ac3ohRpeQ8GMoEbito2nmT-jcM5n63yZt76-aKrnsp11i2Lva1ZXIFFPNG8twT8&amp;__tn__=*NK-R\">#Futuro<\/a> <a href=\"https:\/\/www.facebook.com\/hashtag\/fisioterapia?__eep__=6&amp;__cft__[0]=AZVzooT3nbXcHY0SOPOLjNjXTbehsiY_EBnkgzL5_zjtSdX2DezB2PXkKROUIQGggCTpVkLW-_V3-fMlVdxx0qvieJMmtGeDOP7DgUElhPFVirOZ2oQMJBaS-wuPQfQVhHC3Ac3ohRpeQ8GMoEbito2nmT-jcM5n63yZt76-aKrnsp11i2Lva1ZXIFFPNG8twT8&amp;__tn__=*NK-R\">#Fisioterapia<\/a> <a href=\"https:\/\/www.facebook.com\/hashtag\/collaborazione?__eep__=6&amp;__cft__[0]=AZVzooT3nbXcHY0SOPOLjNjXTbehsiY_EBnkgzL5_zjtSdX2DezB2PXkKROUIQGggCTpVkLW-_V3-fMlVdxx0qvieJMmtGeDOP7DgUElhPFVirOZ2oQMJBaS-wuPQfQVhHC3Ac3ohRpeQ8GMoEbito2nmT-jcM5n63yZt76-aKrnsp11i2Lva1ZXIFFPNG8twT8&amp;__tn__=*NK-R\">#Collaborazione<\/a><\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"554\" height=\"760\" src=\"https:\/\/www.fnofi.it\/ofi-umbria\/wp-content\/uploads\/sites\/38\/2025\/03\/Immagine-WhatsApp-2025-03-02-ore-20.54.10_e3d3db30.jpg\" alt=\"\" class=\"wp-image-2791\" srcset=\"https:\/\/www.fnofi.it\/ofi-umbria\/wp-content\/uploads\/sites\/38\/2025\/03\/Immagine-WhatsApp-2025-03-02-ore-20.54.10_e3d3db30.jpg 554w, https:\/\/www.fnofi.it\/ofi-umbria\/wp-content\/uploads\/sites\/38\/2025\/03\/Immagine-WhatsApp-2025-03-02-ore-20.54.10_e3d3db30-219x300.jpg 219w\" sizes=\"auto, (max-width: 554px) 100vw, 554px\" \/><\/figure>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"665\" height=\"879\" src=\"https:\/\/www.fnofi.it\/ofi-umbria\/wp-content\/uploads\/sites\/38\/2025\/03\/Immagine-WhatsApp-2025-03-02-ore-20.54.10_f2daa55f.jpg\" alt=\"\" class=\"wp-image-2792\" srcset=\"https:\/\/www.fnofi.it\/ofi-umbria\/wp-content\/uploads\/sites\/38\/2025\/03\/Immagine-WhatsApp-2025-03-02-ore-20.54.10_f2daa55f.jpg 665w, https:\/\/www.fnofi.it\/ofi-umbria\/wp-content\/uploads\/sites\/38\/2025\/03\/Immagine-WhatsApp-2025-03-02-ore-20.54.10_f2daa55f-227x300.jpg 227w\" sizes=\"auto, (max-width: 665px) 100vw, 665px\" \/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Il 1\u00b0 marzo 2025, l&#8217;Hotel Fontebella di Assisi ha ospitato un&#8217;importante iniziativa web radiofonica organizzata dall&#8217;Associazione Rare Special Powers APS. Questo evento ha riunito esperti, ricercatori, rappresentanti degli Ordini delle Professioni Sanitarie e Associazioni di familiari, creando una preziosa piattaforma di confronto. Durante l&#8217;incontro, sono stati analizzati lo stato attuale, le sfide da affrontare e [&hellip;]<\/p>\n","protected":false},"author":49,"featured_media":2791,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_themeisle_gutenberg_block_has_review":false,"footnotes":""},"categories":[11],"tags":[],"class_list":["post-2790","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"aioseo_notices":[],"aioseo_head":"\n\t\t<!-- All in One SEO 4.9.9 - aioseo.com -->\n\t<meta name=\"description\" content=\"Il 1\u00b0 marzo 2025, l&#039;Hotel Fontebella di Assisi ha ospitato un&#039;importante iniziativa web radiofonica organizzata dall&#039;Associazione Rare Special Powers APS. 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