{"id":296443,"date":"2026-02-13T18:42:21","date_gmt":"2026-02-13T18:42:21","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/296443\/"},"modified":"2026-02-13T18:42:21","modified_gmt":"2026-02-13T18:42:21","slug":"time100-health-ilaria-villa-time","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/296443\/","title":{"rendered":"TIME100 Health: Ilaria Villa | TIME"},"content":{"rendered":"<p class=\"rich-text mb-6 self-baseline font-graphik text-body-large text-black-coffee focus-visible:outline focus-visible:outline-black-coffee focus-visible:outline-2 focus-visible:outline-offset-2 focus-visible:shadow-focus-color text-left\" data-testid=\"paragraph-content\">In December, the U.S. Food and Drug Administration (FDA) approved the first gene therapy, Waskyra, for the rare condition Wiskott-Aldrich syndrome, which affects the immune system. What\u2019s even more remarkable is that it\u2019s also the <a href=\"https:\/\/www.fda.gov\/news-events\/press-announcements\/fda-approves-first-gene-therapy-treatment-wiskott-aldrich-syndrome\" rel=\"nofollow noopener\" target=\"_blank\">first FDA-approved cell or gene therapy<\/a>\u2014which are notoriously expensive\u2014sponsored by a nonprofit. \u201cRare conditions have become less and less attractive for industry, because the value proposition from a commercial standpoint is pretty limited,\u201d says Ilaria Villa, CEO of Fondazione Telethon, the Italian charity behind the drug. The organization was founded more than 30 years ago by the families of people affected by muscular dystrophy with the goal of collecting funds from TV marathon donations to finance research for rare conditions. Since then, the group has invested heavily in turning their decades of funded research into medicines. <\/p>\n<p class=\"rich-text self-baseline font-graphik text-body-large text-black-coffee mb-0 focus-visible:outline focus-visible:outline-black-coffee focus-visible:outline-2 focus-visible:outline-offset-2 focus-visible:shadow-focus-color text-left\" data-testid=\"paragraph-content\">The approval of Waskyra is a positive sign for their model. But it\u2019s uncharted territory for a nonprofit like theirs. \u201cWe have to keep the balance between making the product as [accessible] as possible to the patients, but at the same time, containing the costs,\u201d says Villa. \u201cWe have to find a better approach to make those products available, sustainable, and scalable over time.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"In December, the U.S. Food and Drug Administration (FDA) approved the first gene therapy, Waskyra, for the rare&hellip;\n","protected":false},"author":2,"featured_media":296444,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[47092,9810,103,397,396,61,60,28976,709,47094,12277,139977],"class_list":{"0":"post-296443","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-healthcare","8":"tag-accolades","9":"tag-franchise","10":"tag-health","11":"tag-health-care","12":"tag-healthcare","13":"tag-ie","14":"tag-ireland","15":"tag-list","16":"tag-magazine","17":"tag-special-project","18":"tag-sponsorshipblock","19":"tag-time100-health-2026"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/296443","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=296443"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/296443\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/296444"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=296443"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=296443"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=296443"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}