{"id":17931,"date":"2026-02-23T08:00:00","date_gmt":"2026-02-23T13:00:00","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=17931"},"modified":"2026-02-24T07:58:08","modified_gmt":"2026-02-24T12:58:08","slug":"raise-your-voice-for-pku","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/raise-your-voice-for-pku\/","title":{"rendered":"Raise Your Voice for PKU"},"content":{"rendered":"\n<p class=\"core-block core-paragraph\">According to&nbsp;EURORDIS, the&nbsp;Rare Disease Day 2026&nbsp;theme,&nbsp;<em>\u201cMore than you can imagine\u201d<\/em>,&nbsp;reminds us&nbsp;that \u201crare diseases touch more lives, involve more conditions, and require more action than most people realize.\u201d&nbsp;&nbsp;<\/p>\n\n\n\n<p class=\"core-block core-paragraph\">In recognition of this&nbsp;powerful&nbsp;global campaign,&nbsp;PTC&nbsp;honors the&nbsp;phenylketonuria (PKU) community by amplifying voices from across&nbsp;the globe. Together, we can raise our voices&nbsp;to shed light on the realities of living with PKU and educate on the&nbsp;unmet needs&nbsp;of this community.&nbsp;<\/p>\n\n\n\n<div  class=\"quote-block quote-block--image color-theme--light-blue\">\n\n\t\t\t<img decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2026\/02\/Prof-Tawfeg-Ben-Omran-Image-342x429.jpeg\" class=\"quote-block__image\" alt=\"Professor Tawfeg Ben Omran\"\/>\n\t\n\t<div class=\"quote-block__content\">\n\t\t<blockquote class=\"quote-block__text color-theme-border--light-blue\">\n\t\t\t<div class=\"quote-block__heading heading--4\">\n\t\t\t\tBy raising our voices for PKU on Rare Disease Day, we stand in solidarity with the entire rare disease community, united in the push for recognition and better care. From infancy to adulthood, every PKU patient has a story of strength behind their daily restrictions. Rare Disease Day is our chance to amplify those stories and drive real change.\t\t\t<\/div>\n\t\t<\/blockquote>\n\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--name\">\n\t\t\t\tProf. Tawfeg Ben-Omran\t\t\t<\/cite>\n\t\t\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--title\">\n\t\t\t\tQatar\t\t\t<\/cite>\n\t\t\t<\/div>\n\n<\/div>\n\n\n\n\n<p class=\"core-block core-paragraph\"><\/p>\n\n\n\n<p class=\"core-block core-paragraph\"><strong>Elaina Jurecki, MS, RD<\/strong>&nbsp;<\/p>\n\n\n\n<div style=\"padding:50% 0 0 0;position:relative;\">\n  <iframe\n    src=\"https:\/\/player.vimeo.com\/video\/1166703641?h=b76f66034b&amp;badge=0&amp;autopause=0&amp;player_id=0&amp;app_id=58479\"\n    frameborder=\"0\"\n    allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\"\n    referrerpolicy=\"strict-origin-when-cross-origin\"\n    style=\"position:absolute;top:0;left:0;width:100%;height:100%;\"\n    title=\"Elaina Jurecki, MS, RD\">\n  <\/iframe>\n<\/div>\n<script src=\"https:\/\/player.vimeo.com\/api\/player.js\"><\/script>\n\n\n\n<p class=\"core-block core-paragraph\"><em>Transcript:&nbsp;One of the individuals that you know with PKU that I work with. She said she is striving for treatment that will&nbsp;allow not&nbsp;diet liberalization, not diet relaxation, diet&nbsp;normalization. I want to have a normal diet.<\/em><\/p>\n\n\n\n<div  class=\"quote-block quote-block--image color-theme--light-blue\">\n\n\t\t\t<img decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2026\/02\/Prof-Groselj.png\" class=\"quote-block__image\" alt=\"Assoc. Prof. Urh Groselj\"\/>\n\t\n\t<div class=\"quote-block__content\">\n\t\t<blockquote class=\"quote-block__text color-theme-border--light-blue\">\n\t\t\t<div class=\"quote-block__heading heading--4\">\n\t\t\t\tPhenylketonuria is one of the clearest examples of how newborn screening can prevent irreversible harm \u2014 but only if screening is implemented early, systematically, and equitably. Globally, even in some parts of Europe, access to comprehensive newborn screening still varies greatly. On Rare Disease Day, we must raise our voices to close these gaps, strengthen screening systems, and ensure that every child with PKU has the same chance for a healthy life, regardless of where they are born.\t\t\t<\/div>\n\t\t<\/blockquote>\n\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--name\">\n\t\t\t\tAssoc. Prof. Urh Groselj\t\t\t<\/cite>\n\t\t\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--title\">\n\t\t\t\tSlovenia\t\t\t<\/cite>\n\t\t\t<\/div>\n\n<\/div>\n\n\n\n\n<p class=\"core-block core-paragraph\"><\/p>\n\n\n\n<p class=\"core-block core-paragraph\"><strong>Marcus&nbsp;Strandepil,&nbsp;Chairman&nbsp;of Swedish PKU Association<\/strong>&nbsp;<\/p>\n\n\n\n<div style=\"padding:50% 0 0 0;position:relative;\"><iframe src=\"https:\/\/player.vimeo.com\/video\/1166703603?h=ab57aa5d0d&amp;badge=0&amp;autopause=0&amp;player_id=0&amp;app_id=58479\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" style=\"position:absolute;top:0;left:0;width:100%;height:100%;\" title=\"Marcus Strandepil - Sweden\"><\/iframe><\/div><script src=\"https:\/\/player.vimeo.com\/api\/player.js\"><\/script>\n\n\n\n<p class=\"core-block core-paragraph\"><em>Transcript: My name is Marcus and&nbsp;I&#8217;m&nbsp;the&nbsp;chairman&nbsp;of the Swedish PKU Association. Living with PKU means there are no breaks. It requires planning,&nbsp;discipline&nbsp;and sacrifice. It affects children,&nbsp;adults&nbsp;and&nbsp;families. I&nbsp;believe&nbsp;if there are medical treatments available,&nbsp;they&nbsp;really should be available to all the patients who need it.<\/em><\/p>\n\n\n\n<div  class=\"quote-block quote-block--image color-theme--light-blue\">\n\n\t\t\t<img decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2026\/02\/Tracy.png\" class=\"quote-block__image\" alt=\"Tracy Beck\"\/>\n\t\n\t<div class=\"quote-block__content\">\n\t\t<blockquote class=\"quote-block__text color-theme-border--light-blue\">\n\t\t\t<div class=\"quote-block__heading heading--4\">\n\t\t\t\tTracy, living with PKU, believes that \u201cwhen you advocate for yourself and your health,\u201d it helps others learn about PKU\u2014both now and in the future.\t\t\t<\/div>\n\t\t<\/blockquote>\n\n\t\t\n\t\t\t<\/div>\n\n<\/div>\n\n\n\n\n<p class=\"core-block core-paragraph\"><\/p>\n\n\n\n<p class=\"core-block core-paragraph\"><strong>Evgeni&nbsp;Doychev, Bulgaria, President of the Bulgarian PKU Association, father of&nbsp;a child with&nbsp;PKU<\/strong>&nbsp;<\/p>\n\n\n\n<div style=\"padding:50% 0 0 0;position:relative;\"><iframe src=\"https:\/\/player.vimeo.com\/video\/1166703434?h=d20ac2e3f1&amp;badge=0&amp;autopause=0&amp;player_id=0&amp;app_id=58479\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" style=\"position:absolute;top:0;left:0;width:100%;height:100%;\" title=\"Evgeni Doychev - Bulgaria\"><\/iframe><\/div><script src=\"https:\/\/player.vimeo.com\/api\/player.js\"><\/script>\n\n\n\n<p class=\"core-block core-paragraph\"><em>Transcript:&nbsp;PKU is a rare disease with the best possible&nbsp;long-term&nbsp;outcome&nbsp;and this can be achieved&nbsp;by means of&nbsp;a rigid diet, a lot of self-discipline and dedication in the family. However, there are aspects of everyday life that PKU patients find hard to cope with. Stigma, embarrassment in social&nbsp;events&nbsp;and alienation. That is why I believe&nbsp;it&#8217;s&nbsp;critical for everyone concerned to make a stand and provide PKU patients with equal opportunities.&nbsp;<\/em><\/p>\n\n\n\n<div  class=\"quote-block quote-block--image color-theme--light-blue\">\n\n\t\t\t<img decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2026\/02\/Prof.-Janos-Bokay-Hungary-342x429.jpg\" class=\"quote-block__image\" alt=\"Professor Janos Bokay\"\/>\n\t\n\t<div class=\"quote-block__content\">\n\t\t<blockquote class=\"quote-block__text color-theme-border--light-blue\">\n\t\t\t<div class=\"quote-block__heading heading--4\">\n\t\t\t\tAlthough effective newborn screening and early initiation of the diet can prevent the dreaded neurological symptoms of PKU, the low-protein diet still poses many challenges in the everyday practice. Bad-tasting formulas reduce adherence, making it more difficult to maintain the dietary goal of keeping patients&#039; Phe levels within the desired range for their age. We must do every effort to ensure, that the quality of life of PKU patients is as close as possible to that of healthy people.\t\t\t<\/div>\n\t\t<\/blockquote>\n\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--name\">\n\t\t\t\tProf. Janos Bokay\t\t\t<\/cite>\n\t\t\n\t\t\t\t\t<cite class=\"quote-block__author quote-block__author--title\">\n\t\t\t\tHungary\t\t\t<\/cite>\n\t\t\t<\/div>\n\n<\/div>\n\n\n\n\n<p class=\"core-block core-paragraph\"><\/p>\n\n\n\n<p class=\"core-block core-paragraph\"><strong>Bojana&nbsp;Terzin, Serbia,&nbsp;President of the Serbian PKU Association and a mother of a boy with PKU<\/strong><\/p>\n\n\n\n<div style=\"padding:50% 0 0 0;position:relative;\"><iframe src=\"https:\/\/player.vimeo.com\/video\/1166703346?h=7ad9b1d4d1&amp;badge=0&amp;autopause=0&amp;player_id=0&amp;app_id=58479\" frameborder=\"0\" allow=\"autoplay; fullscreen; picture-in-picture; clipboard-write; encrypted-media; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" style=\"position:absolute;top:0;left:0;width:100%;height:100%;\" title=\"Bojana Terzin - Serbia\"><\/iframe><\/div><script src=\"https:\/\/player.vimeo.com\/api\/player.js\"><\/script>\n\n\n\n<p class=\"core-block core-paragraph\"><em>Transcript:&nbsp;PKU is&nbsp;maybe an&nbsp;invisible rare disease, but the needs of PKU patients are real&nbsp;and also&nbsp;unmet, such as lack of dietitians here in Serbia, and difficult socialization due to a special diet.&nbsp;We are grateful to everyone who&nbsp;showed&nbsp;understanding, but public awareness must be raised.&nbsp;No one should be denied the basic rights for growth,&nbsp;development&nbsp;and acceptance in society.<\/em><\/p>\n\n\n\n<p class=\"core-block core-paragraph\"><\/p>\n","protected":false},"excerpt":{"rendered":"<p>According to&nbsp;EURORDIS, the&nbsp;Rare Disease Day 2026&nbsp;theme,&nbsp;\u201cMore than you can imagine\u201d,&nbsp;reminds us&nbsp;that \u201crare diseases touch more lives, involve more conditions, and require more action than most people realize.\u201d&nbsp;&nbsp; In recognition of this&nbsp;powerful&nbsp;global campaign,&nbsp;PTC&nbsp;honors the&nbsp;phenylketonuria (PKU) community by amplifying voices from across&nbsp;the globe. Together, we can raise our voices&nbsp;to shed light on the realities of living with&hellip;<\/p>\n","protected":false},"author":14,"featured_media":17962,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19],"tags":[],"media-type":[5,12],"therapeutic-area":[16],"class_list":["post-17931","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.5 (Yoast SEO v27.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Raise Your Voice for PKU - PTC Therapeutics (United States)<\/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.ptcbio.com\/posts\/raise-your-voice-for-pku\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Raise Your Voice for PKU\" \/>\n<meta property=\"og:description\" content=\"According to&nbsp;EURORDIS, the&nbsp;Rare Disease Day 2026&nbsp;theme,&nbsp;\u201cMore than you can imagine\u201d,&nbsp;reminds us&nbsp;that \u201crare diseases touch more lives, involve more conditions, and require more action than most people realize.\u201d&nbsp;&nbsp; In recognition of this&nbsp;powerful&nbsp;global campaign,&nbsp;PTC&nbsp;honors the&nbsp;phenylketonuria (PKU) community by amplifying voices from across&nbsp;the globe. 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