{"id":18610,"date":"2024-02-29T10:47:59","date_gmt":"2024-02-29T10:47:59","guid":{"rendered":"https:\/\/makingpharmaindustry.it\/non-categorizzato\/giornata-delle-malattie-rare-lappuntamento-internazionale-per-aumentare-la-conoscenza-e-favorire-la-sensibilizzazione\/"},"modified":"2024-02-29T11:13:22","modified_gmt":"2024-02-29T11:13:22","slug":"giornata-delle-malattie-rare-lappuntamento-internazionale-per-aumentare-la-conoscenza-e-favorire-la-sensibilizzazione","status":"publish","type":"post","link":"https:\/\/makingpharmaindustry.it\/en\/one-health-en\/giornata-delle-malattie-rare-lappuntamento-internazionale-per-aumentare-la-conoscenza-e-favorire-la-sensibilizzazione\/","title":{"rendered":"Rare Disease Day: the international event to increase knowledge and raise awareness"},"content":{"rendered":"<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwjv-deDsdCEAxUr3gIHHTEMCMsQ3ewLegQIDhAU\"><span class=\"Y2IQFc\" lang=\"en\">For seventeen years, <strong>World Rare Disease Day<\/strong> has been celebrated on February 29th (28th in leap years): the event, now of international scope, is aimed at raising public awareness and increasing awareness of all <strong>pathologies rare<\/strong>, so <strong>the diseases that affect 1 in 2 thousand individuals<\/strong>.<br \/>\nAmong the <strong>main causes<\/strong> concerning rare pathologies we find genetic mutations, chromosomal alterations, infectious agents, allergic reactions, degenerative processes and neoplastic-type proliferative processes.<\/span><\/p>\n<p><span class=\"Y2IQFc\" lang=\"en\">In the world, there are more than <strong>3<\/strong><\/span><strong>00 million people living with a rare disease<\/strong>: in Italy there are around 3 million, of which 1 in 5 is a child. 25 percent of them wait from 5 to 30 years\u00a0to receive confirmation of a <strong>specific diagnosis<\/strong>. Furthermore, there are also rare diseases without a diagnosis, so pathologies that have never received a certain and precise diagnosis:<\/p>\n<ul>\n<li>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwjv-deDsdCEAxUr3gIHHTEMCMsQ3ewLegQIDhAU\"><span class=\"Y2IQFc\" lang=\"en\"><strong>Diseases still &#8220;undiagnosed&#8221;<\/strong>, which have not yet managed to reach a precise diagnosis due to common or misleading symptoms; <\/span><\/p>\n<\/li>\n<li>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwjv-deDsdCEAxUr3gIHHTEMCMsQ3ewLegQIDhAU\"><span class=\"Y2IQFc\" lang=\"en\"><strong>Diseases that are still &#8220;undiagnosable&#8221;<\/strong>, as the disease has not yet been described or the cause has not been identified.<\/span><\/p>\n<\/li>\n<\/ul>\n<p>This context underlines the need to invest in Research:<\/p>\n<p>[su_quote cite=&#8221;<strong>Marcello Cattani<\/strong>, <strong>President of Farmindustria<\/strong>&#8220;]<em><span class=\"Y2IQFc\" lang=\"en\">Much can still be done for Research if the European Commission&#8217;s policy is able to attract the investments and skills of pharmaceutical companies through a modern and competitive regulatory framework that enhances intellectual property rather than weakening it. Knowing how to also attract new financial capital and industrial investments. Just as progress is possible for screening, prevention, early diagnosis, treatment and continuous assistance. Objectives that are well identified in the National Plan for Rare Diseases 2023-2026. The real challenge now is its rapid implementation to guarantee fast and homogeneous access to available therapies across the territory. Pharmaceutical companies will continue to do their part, investing in research and production, to provide increasingly effective answers and new hopes of treatment for citizens, the majority of whom are children, suffering from a rare pathology.<\/span><\/em>[\/su_quote]<\/p>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwjv-deDsdCEAxUr3gIHHTEMCMsQ3ewLegQIDhAU\"><span class=\"Y2IQFc\" lang=\"en\">Cattani also comments on the state of development and production of drugs for Rare Diseases:<\/span><\/p>\n<p><em>[su_quote]<span class=\"Y2IQFc\" lang=\"en\">Almost 180 drugs have been approved for rare diseases by the European Medicines Agency (EMA) between 2002 and 2023, thanks also to the European Regulation on orphan drugs and the protection of intellectual property guaranteed so far. With a positive impact on the health and lives of 6.3 million people with rare diseases in Europe. And there are over 1,800 in development around the world &#8211; 30% of the total &#8211; in particular for rare tumors, rare neurological and gastrointestinal pathologies. Medicines that open new treatment horizons for the 350 million patients globally. Important results, the result of increasingly technological and innovative pharmaceutical research. But they are a starting point: only 5% of rare diseases have an approved treatment, because their rarity makes the R&amp;D of new therapies complex.<\/span>[\/su_quote]<\/em><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>For seventeen years, World Rare Disease Day has been celebrated on February 29th (28th in leap years): the event, now of international scope, is aimed at raising public awareness and increasing awareness of all pathologies rare, so the diseases that affect 1 in 2 thousand individuals. Among the main causes concerning rare pathologies we find [&hellip;]<\/p>\n","protected":false},"author":32,"featured_media":18612,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[807],"tags":[1036,1037,1038],"class_list":{"0":"post-18610","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-one-health-en","8":"tag-malattie-rare-en","9":"tag-rare-diseases-en","10":"tag-ricerca-en"},"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rare Disease Day: the international event to increase knowledge and raise awareness - MakingPharmaIndustry<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/makingpharmaindustry.it\/en\/one-health-en\/giornata-delle-malattie-rare-lappuntamento-internazionale-per-aumentare-la-conoscenza-e-favorire-la-sensibilizzazione\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare Disease Day: the international event to increase knowledge and raise awareness - MakingPharmaIndustry\" \/>\n<meta property=\"og:description\" content=\"For seventeen years, World Rare Disease Day has been celebrated on February 29th (28th in leap years): the event, now of international scope, is aimed at raising public awareness and increasing awareness of all pathologies rare, so the diseases that affect 1 in 2 thousand individuals. 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