{"id":4671,"date":"2014-02-28T09:32:57","date_gmt":"2014-02-28T09:32:57","guid":{"rendered":"https:\/\/benzifoundation.org\/join-together-for-better-care-giornata-malattie-rare-2014\/"},"modified":"2014-02-28T09:32:57","modified_gmt":"2014-02-28T09:32:57","slug":"join-together-for-better-care-giornata-malattie-rare-2014","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/join-together-for-better-care-giornata-malattie-rare-2014\/","title":{"rendered":"\u201cJoin Together for Better Care\u201d &#8211; Giornata malattie rare 2014"},"content":{"rendered":"<p>Il 28 febbraio 2014, ha avuto luogo la settima edizione del Rare Disease Day (Giornata delle Malattie Rare), con il tema &#8220;Insieme per una migliore assistenza&#8221;. L&#8217;evento \u00e8 stato coordinato a livello internazionale da EURORDIS (Organizzazione Europea per le Malattie Rare) e a livello nazionale dalle Alleanze Nazionali e dalle Organizzazioni di Pazienti.<br \/>\nFin dalla sua prima edizione, il Rare Disease Day si \u00e8 posto l&#8217;obiettivo di sensibilizzare l&#8217;opinione pubblica sulle problematiche che affliggono la comunit\u00e0 delle malattie rare, le cui condizioni erano allora riconosciute come una priorit\u00e0 di salute pubblica.<br \/>\nIl tema per il 2014 era l&#8217;assistenza (caring), una delle questioni pi\u00f9 urgenti da affrontare e un bisogno universale per i pazienti e le loro famiglie in tutto il mondo. L&#8217;assistenza, infatti, presentava molteplici sfaccettature, a causa della complessit\u00e0 e della rarit\u00e0 di queste condizioni. Per questo, uno degli obiettivi principali era sviluppare una strategia comune che, indipendentemente dalla peculiarit\u00e0 di ogni singola malattia, fosse in grado di affrontare e risolvere i problemi comuni.<br \/>\nEra necessario sensibilizzare gli attori del sistema \u2014 istituzioni, politici, medici, comunit\u00e0 scientifica, aziende farmaceutiche e professionisti sanitari e sociali \u2014 al fine di raccogliere conoscenze e risorse per ottenere risultati non solo nella scoperta di nuove cure, ma anche nel miglioramento della qualit\u00e0 della vita dei pazienti e delle loro famiglie.<br \/>\nLa Fondazione Gianni Benzi, da sempre coinvolta nel campo delle malattie rare, \u00e8 stata partner del progetto <a href=\"http:\/\/www.innermed.eu\/index.php\/cms\/en\/home\">InNerMeD-I-Network<\/a> (Inherited NeuRoMetabolic Diseases Information Network). Questo progetto mirava a creare una rete di informazione sulla ricerca, la diagnosi e il trattamento delle malattie neurometaboliche (iNMDs), rivolta a pazienti e alle loro famiglie.<br \/>\nLa Fondazione Gianni Benzi ha aderito a questo evento, diventando amica del <a href=\"http:\/\/www.rarediseaseday.org\/friend\/485\">Rare Disease Day <\/a>e mostrando il proprio supporto sul suo<a href=\"http:\/\/www.rarediseaseday.org\/\"> sito web ufficiale<\/a>.    <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Il 28 febbraio 2014, ha avuto luogo la settima edizione del Rare Disease Day (Giornata delle Malattie Rare), con il tema &#8220;Insieme per una migliore assistenza&#8221;. L&#8217;evento \u00e8 stato coordinato a livello internazionale da EURORDIS (Organizzazione Europea per le Malattie Rare) e a livello nazionale dalle Alleanze Nazionali e dalle Organizzazioni di Pazienti. Fin dalla [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":4664,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[215],"tags":[216],"class_list":["post-4671","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases","tag-rare-disease-day"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>\u201cJoin Together for Better Care\u201d - Giornata malattie rare 2014 - Fondazione Gianni Benzi - ETS<\/title>\n<meta name=\"description\" content=\"Fondazione Gianni Benzi support the seventh Rare Disease Day, themed &quot;Join Together for Better Care&quot;, to raise awareness of rare disease\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/benzifoundation.org\/it\/join-together-for-better-care-giornata-malattie-rare-2014\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u201cJoin Together for Better Care\u201d - Giornata malattie rare 2014 - Fondazione Gianni Benzi - ETS\" \/>\n<meta property=\"og:description\" content=\"Fondazione Gianni Benzi support the seventh Rare Disease Day, themed &quot;Join Together for Better Care&quot;, to raise awareness of rare disease\" \/>\n<meta property=\"og:url\" content=\"https:\/\/benzifoundation.org\/it\/join-together-for-better-care-giornata-malattie-rare-2014\/\" \/>\n<meta property=\"og:site_name\" content=\"Fondazione Gianni Benzi - ETS\" \/>\n<meta property=\"article:published_time\" content=\"2014-02-28T09:32:57+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/benzifoundation.org\/wp-content\/uploads\/2026\/01\/RareDiseaseDay.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1440\" \/>\n\t<meta property=\"og:image:height\" content=\"749\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"admin\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Scritto da\" \/>\n\t<meta name=\"twitter:data1\" content=\"admin\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tempo di lettura stimato\" \/>\n\t<meta name=\"twitter:data2\" content=\"1 minuto\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/join-together-for-better-care-giornata-malattie-rare-2014\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/join-together-for-better-care-giornata-malattie-rare-2014\\\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\\\/\\\/benzifoundation.org\\\/it\\\/#\\\/schema\\\/person\\\/b927dbd45f2d82849380299ff732c266\"},\"headline\":\"\u201cJoin Together for Better Care\u201d &#8211; 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