{"id":16861,"date":"2018-03-02T09:38:53","date_gmt":"2018-03-02T08:38:53","guid":{"rendered":"https:\/\/news.save.ch\/?p=2662"},"modified":"2023-08-09T04:22:32","modified_gmt":"2023-08-09T02:22:32","slug":"zeichen-setzen-fuer-die-seltenen","status":null,"type":"post","link":"https:\/\/news.save.ch\/it\/zeichen-setzen-fuer-die-seltenen\/","title":{"rendered":"Un esempio per i pi\u00f9 rari"},"content":{"rendered":"<figure id=\"attachment_16255\" aria-describedby=\"caption-attachment-16255\" style=\"width: 680px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-16255 size-medium\" src=\"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-680x906.jpg\" alt=\"malattie rare\" width=\"680\" height=\"906\" srcset=\"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-680x906.jpg 680w, https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-769x1024.jpg 769w, https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-768x1023.jpg 768w, https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-9x12.jpg 9w, https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-225x300.jpg 225w, https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-263x350.jpg 263w, https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1-601x800.jpg 601w, https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg 901w\" sizes=\"auto, (max-width: 680px) 100vw, 680px\" \/><figcaption id=\"caption-attachment-16255\" class=\"wp-caption-text\">Non \u00e8 solo nella Giornata Internazionale delle Malattie Rare che dobbiamo dare l'esempio. Una malattia rara genetica, infatti, presenta una falla nel puzzle genetico, e questo gi\u00e0 nell'infanzia. \u00a9 obs\/Foundation for People with Rare Diseases\/Fondazione per le Malattie Rare<\/figcaption><\/figure>\n<p>In Svizzera, il numero di persone affette da malattie rare \u00e8 pari a quello del diabete. Sebbene ogni malattia rara sia rara di per s\u00e9 (meno dello 0,05 % della popolazione), ce ne sono molte in totale (oltre 5000) e quindi 6-8 % della popolazione sono affetti da almeno una malattia rara. Tuttavia, solo una (frazione) delle persone colpite ha la probabilit\u00e0 di avere una diagnosi corretta e, sulla base di questa, la migliore gestione possibile della malattia o addirittura una terapia efficace.<\/p>\n<p><strong>Il concetto nazionale di malattie rare non \u00e8 ancora stato attuato<\/strong><\/p>\n<p>Dal momento che solo poche persone soffrono della stessa malattia rara, non sono di interesse n\u00e9 per l'industria farmaceutica n\u00e9 per l'industria farmaceutica. <a href=\"https:\/\/news.save.ch\/it\/schweizer-halten-gesundheitspolitiker-fuer-unfaehig\/\" target=\"_blank\" rel=\"noopener\">Sistema sanitario<\/a> redditizio. Finch\u00e9 il Consiglio Federale 2014 <a href=\"http:\/\/www.bag.admin.ch\/bag\/de\/home\/themen\/mensch-gesundheit\/seltene-krankheiten\/nationales-konzept-seltene-krankheiten.html\" target=\"_blank\" rel=\"noopener\">Approccio nazionale alle malattie rare<\/a> non viene attuato e non sono previsti finanziamenti governativi per le malattie rare poco studiate, le istituzioni specializzate dipendono dall'impegno della popolazione e delle organizzazioni private.<\/p>\n<p>La Fondazione per le Persone con Malattie Rare, senza scopo di lucro e operativa, \u00e8 attiva nel campo della genetica medica dove c'\u00e8 bisogno di intervenire. Ad esempio, nel caso delle malattie rare per le quali non esiste ancora una diagnosi genetica in Svizzera. In questo modo, la Fondazione colma una lacuna del sistema sanitario svizzero con i propri specialisti. Istituzioni simili esistono solo all'estero.<\/p>\n<p><strong>80 % genetico<\/strong><\/p>\n<p>Circa l'80 % delle malattie rare sono genetiche. Per questo motivo, e in relazione alle attuali discussioni politiche sui test genetici, la Fondazione sottolinea che i test genetici a scopo medico (diagnosi genetiche avviate da un medico) non devono essere confusi con i test genetici al di fuori del campo medico (i cosiddetti test genetici lifestyle da Internet o dalla farmacia). I metodi utilizzati e l'interpretazione medica determinano il significato dei risultati, che di solito sono validi per tutta la vita (\"lifetime value\"). Va notato che non tutti i test genetici sono uguali. Date l'esempio, e non solo in occasione della Giornata internazionale delle malattie rare.<\/p>\n<p>Testo: <a href=\"http:\/\/www.stiftung-seltene-krankheiten.ch\" target=\"_blank\" rel=\"noopener\">Fondazione per le persone con malattie rare<\/a><\/p>\n<p><a href=\"https:\/\/www.bag.admin.ch\/bag\/de\/home\/themen\/versicherungen\/krankenversicherung\/krankenversicherung-leistungen-tarife\/Arzneimittel\/verguetung-arzneimittel-im-einzelfall.html\" target=\"_blank\" rel=\"noopener\">Remunerazione dei medicinali in casi individuali<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>In der Schweiz leiden ebenso viele Menschen an seltenen Krankheiten wie an Diabetes. Zwar ist jede seltene Krankheit f\u00fcr sich genommen selten (unter 0,05 % der Bev\u00f6lkerung), aber es gibt insgesamt viele davon (\u00fcber 5000) und so sind 6-8 % der Bev\u00f6lkerung von mindestens einer seltenen Krankheit betroffen. Die richtige Diagnose und darauf basierend ein [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":16255,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"pgc_sgb_lightbox_settings":"","footnotes":""},"categories":[3314],"tags":[168,1908,6020,2146,6021,6022,2165,149,2407,2891,6019,3089],"class_list":["post-16861","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-safety","tag-bundesrat","tag-diabetes","tag-diagnose","tag-gendiagnostik","tag-genetik","tag-gentests","tag-gesundheitsfoerderung","tag-gesundheitsschutz","tag-krankheitsmanagement","tag-seltene-krankheit","tag-seltene-krankheiten","tag-therapie"],"acf":[],"hkrextid":null,"publication":null,"issue":null,"workflow":null,"startPage":null,"spitzmarke":null,"_posts_by_tag_page_fields":{"widget_title":"","widget_tags":""},"_at_widget":"1","_yoast_wpseo_primary_category":"","_yoast_wpseo_focuskw_text_input":null,"_yoast_wpseo_opengraph-image":null,"_yoast_wpseo_opengraph-description":null,"_yoast_wpseo_opengraph-title":null,"enclosure":null,"_yoast_wpseo_twitter-title":null,"_yoast_wpseo_twitter-description":null,"_yoast_wpseo_twitter-image":null,"_wp_old_slug":null,"_yoast_wpseo_title":null,"_yoast_wpseo_canonical":null,"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Zeichen setzen f\u00fcr die Seltenen - Save<\/title>\n<meta name=\"description\" content=\"Jeweils Ende Februar ist der internationale Tag der seltenen Krankheiten. Zu diesem Anlass finden seit 2008 weltweit Kampagnen und Veranstaltungen statt, um auf ein akutes, aber wenig bekanntes Thema aufmerksam zu machen.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/news.save.ch\/it\/zeichen-setzen-fuer-die-seltenen\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Zeichen setzen f\u00fcr die Seltenen - Save\" \/>\n<meta property=\"og:description\" content=\"Jeweils Ende Februar ist der internationale Tag der seltenen Krankheiten. Zu diesem Anlass finden seit 2008 weltweit Kampagnen und Veranstaltungen statt, um auf ein akutes, aber wenig bekanntes Thema aufmerksam zu machen.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/news.save.ch\/it\/zeichen-setzen-fuer-die-seltenen\/\" \/>\n<meta property=\"og:site_name\" content=\"Save\" \/>\n<meta property=\"article:published_time\" content=\"2018-03-02T08:38:53+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-08-09T02:22:32+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"901\" \/>\n\t<meta property=\"og:image:height\" content=\"1200\" \/>\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=\"3 minuti\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/\"},\"author\":{\"name\":\"admin\",\"@id\":\"https:\\\/\\\/news.save.ch\\\/de\\\/#\\\/schema\\\/person\\\/d49e199490bad7c70d64b9ab51142f2b\"},\"headline\":\"Zeichen setzen f\u00fcr die Seltenen\",\"datePublished\":\"2018-03-02T08:38:53+00:00\",\"dateModified\":\"2023-08-09T02:22:32+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/\"},\"wordCount\":370,\"publisher\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/de\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/news.save.ch\\\/wp-content\\\/uploads\\\/2018\\\/03\\\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg\",\"keywords\":[\"Bundesrat\",\"Diabetes\",\"Diagnose\",\"Gendiagnostik\",\"Genetik\",\"Gentests\",\"Gesundheitsf\u00f6rderung\",\"Gesundheitsschutz\",\"Krankheitsmanagement\",\"seltene Krankheit\",\"seltene Krankheiten\",\"Therapie\"],\"articleSection\":[\"HEALTH &amp; SAFETY\"],\"inLanguage\":\"it-IT\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/\",\"url\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/\",\"name\":\"Zeichen setzen f\u00fcr die Seltenen - Save\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/de\\\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/#primaryimage\"},\"image\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/news.save.ch\\\/wp-content\\\/uploads\\\/2018\\\/03\\\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg\",\"datePublished\":\"2018-03-02T08:38:53+00:00\",\"dateModified\":\"2023-08-09T02:22:32+00:00\",\"description\":\"Jeweils Ende Februar ist der internationale Tag der seltenen Krankheiten. Zu diesem Anlass finden seit 2008 weltweit Kampagnen und Veranstaltungen statt, um auf ein akutes, aber wenig bekanntes Thema aufmerksam zu machen.\",\"breadcrumb\":{\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/#breadcrumb\"},\"inLanguage\":\"it-IT\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\\\/\\\/news.save.ch\\\/zeichen-setzen-fuer-die-seltenen\\\/#primaryimage\",\"url\":\"https:\\\/\\\/news.save.ch\\\/wp-content\\\/uploads\\\/2018\\\/03\\\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg\",\"contentUrl\":\"https:\\\/\\\/news.save.ch\\\/wp-content\\\/uploads\\\/2018\\\/03\\\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg\",\"width\":901,\"height\":1200,\"caption\":\"Nicht nur am internationalen Tag der seltenen Krankheiten gilt es, Zeichen zu setzen. 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Zu diesem Anlass finden seit 2008 weltweit Kampagnen und Veranstaltungen statt, um auf ein akutes, aber wenig bekanntes Thema aufmerksam zu machen.","og_url":"https:\/\/news.save.ch\/it\/zeichen-setzen-fuer-die-seltenen\/","og_site_name":"Save","article_published_time":"2018-03-02T08:38:53+00:00","article_modified_time":"2023-08-09T02:22:32+00:00","og_image":[{"width":901,"height":1200,"url":"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg","type":"image\/jpeg"}],"author":"admin","twitter_card":"summary_large_image","twitter_misc":{"Scritto da":"admin","Tempo di lettura stimato":"3 minuti"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/#article","isPartOf":{"@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/"},"author":{"name":"admin","@id":"https:\/\/news.save.ch\/de\/#\/schema\/person\/d49e199490bad7c70d64b9ab51142f2b"},"headline":"Zeichen setzen f\u00fcr die Seltenen","datePublished":"2018-03-02T08:38:53+00:00","dateModified":"2023-08-09T02:22:32+00:00","mainEntityOfPage":{"@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/"},"wordCount":370,"publisher":{"@id":"https:\/\/news.save.ch\/de\/#organization"},"image":{"@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/#primaryimage"},"thumbnailUrl":"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg","keywords":["Bundesrat","Diabetes","Diagnose","Gendiagnostik","Genetik","Gentests","Gesundheitsf\u00f6rderung","Gesundheitsschutz","Krankheitsmanagement","seltene Krankheit","seltene Krankheiten","Therapie"],"articleSection":["HEALTH &amp; SAFETY"],"inLanguage":"it-IT"},{"@type":"WebPage","@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/","url":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/","name":"Dare l'esempio ai pi\u00f9 rari - Salva","isPartOf":{"@id":"https:\/\/news.save.ch\/de\/#website"},"primaryImageOfPage":{"@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/#primaryimage"},"image":{"@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/#primaryimage"},"thumbnailUrl":"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg","datePublished":"2018-03-02T08:38:53+00:00","dateModified":"2023-08-09T02:22:32+00:00","description":"Ogni anno, alla fine di febbraio, si celebra la Giornata internazionale delle malattie rare. In questa occasione, dal 2008 si svolgono in tutto il mondo campagne ed eventi per attirare l'attenzione su un problema acuto ma poco conosciuto.","breadcrumb":{"@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/#breadcrumb"},"inLanguage":"it-IT","potentialAction":[{"@type":"ReadAction","target":["https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/"]}]},{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/news.save.ch\/zeichen-setzen-fuer-die-seltenen\/#primaryimage","url":"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg","contentUrl":"https:\/\/news.save.ch\/wp-content\/uploads\/2018\/03\/puzzle_kid_smile_gross_300dpi-scaled-1.jpg","width":901,"height":1200,"caption":"Nicht nur am internationalen Tag der seltenen Krankheiten gilt es, Zeichen zu setzen. 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