{"id":4667,"date":"2022-02-28T08:02:40","date_gmt":"2022-02-28T08:02:40","guid":{"rendered":"https:\/\/benzifoundation.org\/fondazione-celebra-giornata-malattie-rare-con-share-your-voice\/"},"modified":"2022-02-28T08:02:40","modified_gmt":"2022-02-28T08:02:40","slug":"fondazione-celebra-giornata-malattie-rare-con-share-your-voice","status":"publish","type":"post","link":"https:\/\/benzifoundation.org\/it\/fondazione-celebra-giornata-malattie-rare-con-share-your-voice\/","title":{"rendered":"Fondazione celebra giornata malattie rare con \u201cShare your voice\u201d"},"content":{"rendered":"<p>Oggi si festeggia la <strong><a href=\"https:\/\/www.rarediseaseday.org\/\" target=\"_blank\" rel=\"noopener\">Giornata delle Malattie Rare<\/a><\/strong> e Fondazione Benzi \u00e8 felice di supportarla anche quest\u2019anno con l\u2019iniziativa \u201c<strong>Share your voice: what it means to be rare<\/strong>\u201d.<\/p>\n<p>Siamo attivamente coinvolti in progetti di ricerca che promuovono l\u2019innovazione scientifica e l\u2019accesso ai trattamenti per le malattie rare. In questo ambito, promuovere il coinvolgimento dei pazienti \u00e8 importante anche per garantire che i loro bisogni sanitari diventino una priorit\u00e0, soprattutto nei processi decisionali. <\/p>\n<p>In tutto il mondo ci sono 300 milioni di persone che vivono con una malattia rara. I loro bisogni non devono e non possono essere ignorati! <\/p>\n<p>Vorremmo mettere in risalto i loro bisogni al fine di assicurare che questi vengano meglio identificati e soddisfatti. A tal fine, abbiamo raccolto i contributi dei pazienti con malattie rare relativi alla loro personale esperienza, incluse le sfide che devono affrontare. In particolare, questioni importanti sulla talassemia sono state sollevate da un paziente dell\u2019<a href=\"https:\/\/www.thalassemicibari.it\/\" target=\"_blank\" rel=\"noopener\"><strong><em>Associazione Italiana Thalassemici \u2013 Sez. Prov. Bari<\/em><\/strong><\/a>, cos\u00ec come sui tumori rari grazie ad un rappresentante dell\u2019associazione dei pazienti <em><strong><a href=\"https:\/\/www.apsbottegadelsorriso.it\/\" target=\"_blank\" rel=\"noopener\">Bottega del Sorriso<\/a><\/strong><\/em>. Inoltre, \u00e8 stato fornito un approfondimento sull\u2019esperienza di un giovane paziente con talassemia, da parte del Young Persons Advisory Group<a href=\"https:\/\/www.teddynetwork.net\/ypag-kids-albania\/\" target=\"_blank\" rel=\"noopener\"><em> KIDS Albania<\/em><\/a>.  <\/p>\n<p>Siamo estremamente onorati che abbiano accettato di condividere la loro voce, permettendo a noi e ad altri stakeholder di considerare le possibili azioni da implementare come punto di partenza per rispondere ai loro bisogni.<\/p>\n<p>\u00c8 stato appena pubblicato sul nostro sito un video che include tutti questi contributi. Guarda il video e condividilo!<\/p>\n<p style=\"text-align: center;\"><strong>Share your colours!<\/strong><\/p>\n<p><iframe loading=\"lazy\" title=\"Rare Disease Day 2022 - Share your voice: what it means to be rare\" width=\"1080\" height=\"608\" src=\"https:\/\/www.youtube.com\/embed\/7hEMBfrRCkY?feature=oembed\"  allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Today we celebrate Rare Disease Day and Fondazione Benzi is happy to support it also this year with the initiative \u201cShare your voice: what it means to be rare\u201d.<\/p>\n","protected":false},"author":1,"featured_media":4660,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[215],"tags":[216],"class_list":["post-4667","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 - 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