{"id":2419,"date":"2024-06-13T23:50:25","date_gmt":"2024-06-13T23:50:25","guid":{"rendered":"https:\/\/exam.pscnotes.com\/current-affairs\/?p=2419"},"modified":"2024-06-13T23:50:25","modified_gmt":"2024-06-13T23:50:25","slug":"ensure-fund-for-rare-diseases-centre-told","status":"publish","type":"post","link":"https:\/\/exam.pscnotes.com\/current-affairs\/ensure-fund-for-rare-diseases-centre-told\/","title":{"rendered":"Ensure fund for rare diseases, Centre told"},"content":{"rendered":"<p>Taking up the cudgel on behalf of the patients diagnosed with ultra-rare genetic conditions such as Lysosomal Storage Disorders, 24 Parliamentarians from across party lines have urged the Centre to ensure a <div class=\"youtube-subscribe-container\">\r\n        <a href=\"https:\/\/www.youtube.com\/channel\/UCNHT8lW-JmLC68rjBfZhdkg?sub_confirmation=1\" target=\"_blank\" class=\"youtube-subscribe-button\">\r\n            <span class=\"youtube-icon\">\r\n                <svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 576 512\">\r\n                    <path d=\"M549.7 124.1c-6.3-23.7-24.8-42.3-48.3-48.6C458.8 64 288 64 288 64S117.2 64 74.6 75.5c-23.5 6.3-42 24.9-48.3 48.6-11.4 42.9-11.4 132.3-11.4 132.3s0 89.4 11.4 132.3c6.3 23.7 24.8 41.5 48.3 47.8C117.2 448 288 448 288 448s170.8 0 213.4-11.5c23.5-6.3 42-24.2 48.3-47.8 11.4-42.9 11.4-132.3 11.4-132.3s0-89.4-11.4-132.3zm-317.5 213.5V175.2l142.7 81.2-142.7 81.2z\"\/>\r\n                <\/svg>\r\n            <\/span>\r\n            Subscribe on YouTube\r\n        <\/a>\r\n  <div class=\"telegram-channel-container\">\r\n        <a href=\"https:\/\/t.me\/pscnotes2025\" target=\"_blank\" class=\"telegram-channel-button\">\r\n            <span class=\"telegram-icon\">\r\n                <svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" viewBox=\"0 0 496 512\">\r\n                    <path fill=\"white\" d=\"M248,8C111,8,0,119,0,256s111,248,248,248s248-111,248-248S385,8,248,8z M362,177L320,367c-3,14-10,18-20,14l-56-41l-27,26 c-3,3-5,5-10,5l4-63L323,196c5-5-1-7-8-3l-98,62l-42-13c-9-3-10-9,2-14l162-63C351,160,365,164,362,177z\"\/>\r\n                <\/svg>\r\n            <\/span>\r\n            Join Our Telegram Channel\r\n        <\/a>\r\n    <\/div>   <\/div> sustainable fund to manage certain diseases under the National Policy for Rare Diseases, 2021.<\/p>\n<p>This unending delay on the part of the Centres of Excellence (CoEs) has caused serious concern and anxiety to the patients and their families. Most of these patients are diagnosed with life-threatening rare genetic conditions, including Lysosomal Storage Disorders like Gaucher disease, Pompe disease.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Taking up the cudgel on behalf of the patients diagnosed with ultra-rare genetic conditions such as Lysosomal Storage Disorders, 24 Parliamentarians from across party lines have urged the Centre to ensure a sustainable fund to manage certain diseases under the National Policy for Rare Diseases, 2021. This unending delay on the part of the Centres &#8230; <a title=\"Ensure fund for rare diseases, Centre told\" class=\"read-more\" href=\"https:\/\/exam.pscnotes.com\/current-affairs\/ensure-fund-for-rare-diseases-centre-told\/\">Read more <span class=\"screen-reader-text\">Ensure fund for rare diseases, Centre told<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[595],"tags":[634],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v22.2 (Yoast SEO v23.3) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Ensure fund for rare diseases, Centre told - Current Affairs Exam<\/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:\/\/exam.pscnotes.com\/current-affairs\/2024\/06\/13\/ensure-fund-for-rare-diseases-centre-told\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Ensure fund for rare diseases, Centre told\" \/>\n<meta property=\"og:description\" content=\"Taking up the cudgel on behalf of the patients diagnosed with ultra-rare genetic conditions such as Lysosomal Storage Disorders, 24 Parliamentarians from across party lines have urged the Centre to ensure a sustainable fund to manage certain diseases under the National Policy for Rare Diseases, 2021. 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