{"id":1491,"date":"2022-11-16T18:56:58","date_gmt":"2022-11-16T17:56:58","guid":{"rendered":"https:\/\/www.orchestraperlavita.org\/?p=1491"},"modified":"2022-11-16T18:57:00","modified_gmt":"2022-11-16T17:57:00","slug":"sarcoma-epitelioide-orchestra-per-la-vita-aps-aderisce-ad-alleanza-malattie-rare-una-opportunita-importante-secondo-la-presidente-leda-berto-ed-andrea-bolzicco-responsabile-ricerca","status":"publish","type":"post","link":"https:\/\/www.orchestraperlavita.org\/?p=1491","title":{"rendered":"Sarcoma Epitelioide: &#8220;Orchestra per la vita&#8221; APS aderisce ad Alleanza Malattie Rare"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">L&#8217;Associazione &#8220;Orchestra per la vita&#8221; APS aderisce ad Alleanza Malattie Rare ( <a href=\"https:\/\/www.osservatoriomalattierare.it\/alleanza-malattie-rare\">https:\/\/www.osservatoriomalattierare.it\/alleanza-malattie-rare<\/a>  ) un &#8220;Tavolo tecnico permanente&#8221; tra associazioni ed il Parlamento : una opportunit\u00e0 importante secondo la Presidente Leda Berto ed Andrea Bolzicco, responsabile <a href=\"https:\/\/www.orchestraperlavita.org\/?page_id=660\">Ricerca<\/a>.<br><\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img loading=\"lazy\" decoding=\"async\" width=\"342\" height=\"214\" src=\"https:\/\/www.orchestraperlavita.org\/wp-content\/uploads\/2022\/11\/logo-alleanza-per-omar.jpg\" alt=\"\" class=\"wp-image-1493\" srcset=\"https:\/\/www.orchestraperlavita.org\/wp-content\/uploads\/2022\/11\/logo-alleanza-per-omar.jpg 342w, https:\/\/www.orchestraperlavita.org\/wp-content\/uploads\/2022\/11\/logo-alleanza-per-omar-300x188.jpg 300w\" sizes=\"auto, (max-width: 342px) 100vw, 342px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">L\u2019Alleanza Malattie Rare rappresenta dunque un luogo di fattiva collaborazione tra la societ\u00e0 civile ed il mondo istituzionale con lo scopo di migliorare l\u2019organizzazione dell\u2019intero settore delle malattie rare, toccando anche i temi della disabilit\u00e0, dell\u2019assistenza e dell\u2019inclusione.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">L\u2019obiettivo \u00e8 l\u2019elaborazione di proposte utili a favorire lo sviluppo e la piena implementazione di politiche di gestione e presa in carico delle persone affette da malattie rare e di sostegno allo sviluppo dei farmaci orfani.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">L&#8217;associazione sta facendo uno sforzo incredibile nella direzione della ricerca e sicuramente nei prossimi anni raccoglier\u00e0 i frutti di tutto questo lavoro. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Sar\u00e0 per\u00f2 necessario non vanificare il tutto e permettere di avere pronti tutti gli strumenti legislativi nel campo di approvazione delle nuove cosiddette &#8220;<a href=\"https:\/\/www.osservatorioterapieavanzate.it\/terapie-avanzate\">terapie avanzate<\/a>&#8221; e della sperimentazione clinica.<br><br>Ricordiamo che a tutt&#8217;oggi il <a href=\"https:\/\/www.orpha.net\/consor\/cgi-bin\/OC_Exp.php?lng=IT&amp;Expert=511186\">Tazemetostat<\/a>, sostenuto nel suo sviluppo anche dalla nostra Associazione attraverso il finanziamento di studi presso <a href=\"https:\/\/www.istitutotumori.mi.it\/\">l&#8217;Istituto Nazionale dei Tumori<\/a> di Milano, non \u00e8 ancora approvato dall&#8217; EMA mentre negli Stati Uniti lo \u00e8 dal 2020.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>L&#8217;Associazione &#8220;Orchestra per la vita&#8221; APS aderisce ad Alleanza Malattie Rare ( https:\/\/www.osservatoriomalattierare.it\/alleanza-malattie-rare ) un &#8220;Tavolo tecnico permanente&#8221; tra associazioni ed il Parlamento : una opportunit\u00e0 importante secondo la Presidente Leda Berto ed Andrea Bolzicco, responsabile Ricerca. L\u2019Alleanza Malattie Rare <a href=\"https:\/\/www.orchestraperlavita.org\/?p=1491\" class=\"read-more\">Read More &#8230;<\/a><\/p>\n","protected":false},"author":7,"featured_media":1493,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"ngg_post_thumbnail":0,"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":0,"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","footnotes":""},"categories":[151],"tags":[217,212,216,154],"class_list":["post-1491","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-top-news","tag-alleanza-malattie-rare","tag-andrea-bolzicco","tag-leda-berto","tag-sarcoma-epitelioide"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.5 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Sarcoma Epitelioide: &quot;Orchestra per la vita&quot; 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