{"id":4022,"date":"2026-02-25T08:25:42","date_gmt":"2026-02-25T07:25:42","guid":{"rendered":"https:\/\/iph-multisite.berta-bewegt.ch\/?page_id=4022"},"modified":"2026-02-25T08:25:43","modified_gmt":"2026-02-25T07:25:43","slug":"seltene-krankheiten","status":"publish","type":"page","link":"https:\/\/www.interpharma.ch\/en\/themen\/fuhrend-in-forschung-entwicklung\/neue-forschungs-und-therapieansaetze\/seltene-krankheiten\/","title":{"rendered":"Rare diseases"},"content":{"rendered":"\n<p>A\ndisease is considered to be rare if it affects no more than 5 in every 10,000\npeople. To date, between 6,000 and 8,000 rare diseases have been described\nworldwide, and new ones are being identified all the time. The majority of rare\ndiseases have a genetic basis, but the cause of many has not yet been\ndiscovered. <\/p>\n\n\n\n<p>Awareness\nof the problem of rare diseases is low in Switzerland, although more than half\na million patients are estimated to be affected. This figure is far higher than\nthe number of people with diabetes.<\/p>\n\n\n\n<p>Rare\ndiseases are very often severe, take a chronic course and can be disabling or\nlife-threatening. The difficulty is compounded by the fact that it usually\ntakes much longer to reach the correct diagnosis than with more common\ndiseases. Knowledge about the course the disease takes is often lacking and\nthere are few options for therapy. If a medicinal product is available for\npeople affected by a rare disease, the situation regarding reimbursement of the\ncost by the health insurance providers is in many cases unclear. <\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-national-concept-for-rare-diseases\"><strong>National Concept for Rare\nDiseases<\/strong><strong><\/strong><\/h2>\n\n\n\n<p>In its National Concept for Rare Diseases (2014\u20132019), the Federal Council adopted 19 measures to achieve seven objectives. However, work to improve care for patients with rare diseases is continuing.<\/p>\n\n\n\n<p>A key task in this regard is the creation of reference centers for various groups of rare diseases throughout Switzerland. These centers are coordinated by the National Coordination Center for Rare Diseases (kosek) and linked together in national networks.<\/p>\n\n\n\n<p>Other important priorities include the further development and operation of the Swiss Rare Diseases Registry and the work of the parent organization ProRaris.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-federal-act-on-rare-diseases\"><strong>Federal Act on Rare Diseases<\/strong><\/h2>\n\n\n\n<p>Following the expiry of the National Concept for Rare Diseases, Parliament tasked the Federal Council in 2022 with creating a legal basis to ensure the sustainability of the measures set out in the strategy (<a href=\"https:\/\/www.parlament.ch\/de\/ratsbetrieb\/suche-curia-vista\/geschaeft?AffairId=20223379\">Motion 22.3379 Strengthening and financing patient organizations in the field of rare diseases<\/a> and <a href=\"https:\/\/www.parlament.ch\/de\/ratsbetrieb\/suche-curia-vista\/geschaeft?AffairId=20213978\">Motion 21.3978 For the sustainable financing of public health projects under the National Strategy for Rare Diseases<\/a>).<\/p>\n\n\n\n<p>The new law is intended to ensure the financing of the register for rare diseases, the coordination of care, and the work of patient organizations.<\/p>\n\n\n\n<p><\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-looking-to-the-future\"><strong>Looking to the future<\/strong><strong><\/strong><\/h2>\n\n\n\n<p>We\nare gradually learning how more and more rare diseases develop. This knowledge\nis the foundation on which new therapies are based. Rare diseases are often\ncaused by a relatively simple mechanism. In some cases, the medicines used to\ntreat a rare disease are also effective in other, more common diseases.\nExpectations are high for gene and cell therapies and personalised medicine\nsince a large proportion of rare diseases have a genetic basis. Stem cell\nresearch could also contribute to the therapy of rare diseases. Major progress\ncan be expected in diagnosis, in particular.<\/p>\n\n\n\n<p>The\nresearch-based pharmaceutical industry in Switzerland is a front runner in\nresearch and development in the field of rare diseases. Swiss manufacturers of\nmedicinal products rank highly among the companies that have been granted\nproduct authorisations by the regulatory bodies in the USA and Europe.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A disease is considered to be rare if it affects no more than 5 in every 10,000 people. To date, between 6,000 and 8,000 rare diseases have been described worldwide, and new ones are being identified all the time. The majority of rare diseases have a genetic basis, but the cause of many has not [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":4178,"menu_order":1,"comment_status":"closed","ping_status":"closed","template":"page-templates\/unterthema.php","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-4022","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Rare diseases - Interpharma<\/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:\/\/www.interpharma.ch\/en\/themen\/fuhrend-in-forschung-entwicklung\/neue-forschungs-und-therapieansaetze\/seltene-krankheiten\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare diseases\" \/>\n<meta property=\"og:description\" content=\"A disease is considered to be rare if it affects no more than 5 in every 10,000 people. 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