{"id":136261,"date":"2024-10-08T19:57:13","date_gmt":"2024-10-08T14:27:13","guid":{"rendered":"https:\/\/pwonlyias.com\/stage\/?post_type=current-affairs&#038;p=136261"},"modified":"2024-10-10T08:42:24","modified_gmt":"2024-10-10T03:12:24","slug":"national-fund-for-rare-diseases","status":"publish","type":"current-affairs","link":"https:\/\/pwonlyias.com\/stage\/current-affairs\/national-fund-for-rare-diseases","title":{"rendered":"National Fund for Rare Diseases"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">The Delhi High Court directed the Union Government to establish the National Fund for Rare Diseases (NFRD).<\/span><\/p>\n<h2><strong><span style=\"font-size: 18pt;\">High Court Allocates \u20b9974 Crore for Rare Diseases, Forms National Committee<\/span><\/strong><\/h2>\n<ul>\n<li><span style=\"font-weight: 400;\">The Court also directed to allocate a sum of Rs 974 crore to the NFRD for the financial years 2024-25, and 2025-26.<\/span><\/li>\n<li><span style=\"font-weight: 400;\">The Court&#8217;s decision was influenced by the previous underutilization of funds.<\/span>\n<ul>\n<li><span style=\"font-weight: 400;\">Only \u20b9119.35 crore of the \u20b9402.67 crore allocated for treating Rare Disease was spent between 2017 to 2022.<\/span><\/li>\n<\/ul>\n<\/li>\n<li><span style=\"font-weight: 400;\">The\u00a0 High court also directed for the establishment of\u00a0 the <\/span><b>National Rare Disease Cases Committee.<\/b><\/li>\n<\/ul>\n<p style=\"text-align: center;\"><span class=\"vc_button\"><a href=\"https:\/\/www.pw.live\/batches\/upsc\/pw-only-ias?utm_source=seo+upsc+batch&#038;utm_medium=seo+upsc&#038;utm_campaign=seo&#038;utm_id=upsc\" target=\"_blank\" rel=\"noopener\">Enroll now for UPSC Online Classes<\/a><\/span><\/p>\n<h2><span style=\"font-size: 18pt;\"><b>What are Rare Diseases?<\/b><\/span><\/h2>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Rare diseases are conditions with a low prevalence, affecting a small population.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>According to WHO<\/b><span style=\"font-weight: 400;\">, a disease is considered rare if it affects<\/span><b> 1 or fewer in 1,000 people.<\/b>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">They include genetic diseases, rare cancers, tropical diseases, and degenerative disorders.<\/span><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Global Scenario:<\/b><span style=\"font-weight: 400;\"> Over 7,000 rare diseases exist, but <\/span><b>only 5%<\/b><span style=\"font-weight: 400;\"> are treatable.\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>India&#8217;s Rare Disease Burden:<\/b><span style=\"font-weight: 400;\"> India accounts for a significant portion of the global rare disease cases, with estimates suggesting that between 80 to 100 million people are affected.<\/span>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><b>About 75%<\/b><span style=\"font-weight: 400;\"> of those are children, and many of these diseases are life-threatening, contributing to high child mortality rates.<\/span><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<h2><span style=\"font-size: 18pt;\"><b>Challenges Posed by Rare Diseases<\/b><\/span><\/h2>\n<ul>\n<li><b>Limited Access to Care<\/b><span style=\"font-weight: 400;\">: Lack of specialist availability hinder access, resulting in care disparities.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Diagnostic Delays:<\/b><span style=\"font-weight: 400;\"> Many rare diseases are poorly understood, leading to long diagnostic odysseys, misdiagnoses, and prolonged suffering.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Treatment Issues:<\/b><span style=\"font-weight: 400;\"> Limited research yields few approved treatments; healthcare professionals may lack experience or knowledge in managing these diseases.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Financial Burden:<\/b><span style=\"font-weight: 400;\"> High costs of treatment and care can lead to financial hardship for families and strain national healthcare systems.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Psychosocial Impact:<\/b><span style=\"font-weight: 400;\"> Patients and families face stress, anxiety, and social isolation, significantly affecting mental health.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Education and Awareness:<\/b><span style=\"font-weight: 400;\"> Lack of public understanding leads to misconceptions and stigma; increased awareness is essential for support and early diagnosis.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>Research and Innovation:<\/b><span style=\"font-weight: 400;\"> Small patient populations and limited funding hinder research; collaboration among stakeholders is crucial for advancing therapies and outcomes.<\/span><\/li>\n<\/ul>\n<h2><span style=\"font-size: 18pt;\"><b>National Policy for Rare Diseases (NPRD), 2021<\/b><\/span><\/h2>\n<ul>\n<li><b>Aim<\/b><span style=\"font-weight: 400;\">: To reduce the prevalence and incidence of rare diseases in India.<\/span><\/li>\n<li><span style=\"font-weight: 400;\">It categorises rare diseases into three groups based on treatment needs:<\/span>\n<ul>\n<li><b>Group 1:<\/b><span style=\"font-weight: 400;\"> Disorders that can be treated with a one-time curative treatment.<\/span><\/li>\n<li><b>Group 2:<\/b><span style=\"font-weight: 400;\"> Diseases requiring long-term or lifelong treatment but with lower treatment costs.<\/span><\/li>\n<li><b>Group 3:<\/b><span style=\"font-weight: 400;\"> Diseases that have a definitive treatment, but patient selection is difficult, and costs are high.<\/span><\/li>\n<\/ul>\n<\/li>\n<li><b>Centres of Excellence (CoEs):<\/b><span style=\"font-weight: 400;\"> These are identified health facilities dedicated to diagnosing, preventing, and treating rare diseases. Eight such centres have been designated.<\/span><\/li>\n<li><b>Financial Support:<\/b>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Up to \u20b95 crore is provided to upgrade diagnostic facilities at CoEs.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Patients suffering from rare diseases can receive up to \u20b950 lakh for treatment at CoEs, separate from the Rashtriya Arogya Nidhi (RAN) scheme, which offers a maximum of \u20b920 lakh.<\/span><\/li>\n<\/ul>\n<\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><b>National Registry: <\/b><span style=\"font-weight: 400;\">A hospital-based national registry is being developed to collect data and support research into rare diseases.<\/span><\/li>\n<\/ul>\n<p style=\"text-align: center;\"><span class=\"vc_button\"><a href=\"https:\/\/store.pw.live\/govt-entrance-exams\/upsc-books\/upsc-textbooks?utm_source=SEO&#038;utm_medium=PW+Live&#038;utm_campaign=UPSC+Textbooks\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Check Out UPSC NCERT Textbooks From PW Store<\/span><\/a><\/span><\/p>\n<h2><span style=\"font-size: 18pt;\"><b>National Rare Disease Cases Committee<\/b><\/span><\/h2>\n<ul>\n<li><span style=\"font-weight: 400;\">It is\u00a0 a<\/span><b> five-member panel<\/b><span style=\"font-weight: 400;\"> to implement the rare diseases policy.<\/span><\/li>\n<li><b>Members: <\/b><span style=\"font-weight: 400;\">Experts from relevant fields, including medical professionals, policymakers, and representatives from healthcare institutions.<\/span><\/li>\n<li><b>This committee is responsible for:<\/b><\/li>\n<li style=\"list-style-type: none;\">\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Assessing individual cases to determine treatment needs.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Implementing policy provisions through guidelines and strategies.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Facilitating coordination among medical experts, policymakers, and healthcare institutions to address the challenges related to rare diseases.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"2\"><span style=\"font-weight: 400;\">Monthly meeting, faster approval, and better Utilisation of Fund.<\/span><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<div class=\"vc_table_green\"><\/p>\n<table style=\"width: 100.043%;\">\n<tbody>\n<tr>\n<td style=\"width: 130.811%; text-align: center; border-style: solid; border-color: #000000;\" colspan=\"2\"><span style=\"font-size: 18pt;\"><b>Must Read<\/b><\/span><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 50.5357%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/pwonlyias.com\/stage\/editorial-analysis\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">UPSC Daily Editorials<\/span><\/a><\/td>\n<td style=\"width: 80.2753%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/pwonlyias.com\/stage\/daily-current-affairs\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">UPSC Daily Current Affairs<\/span><\/a><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 50.5357%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/store.pw.live\/govt-entrance-exams\/upsc-books\/upsc-textbooks?utm_source=SEO&#038;utm_medium=PW+Live&#038;utm_campaign=UPSC+Textbooks\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Check Out UPSC NCERT Textbooks From PW Store<\/span><\/a><\/td>\n<td style=\"width: 80.2753%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/store.pw.live\/govt-entrance-exams\/upsc-books\/upsc-modules?utm_source=SEO&#038;utm_medium=PW+Live&#038;utm_campaign=UPSC+Modules\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Check Out UPSC Modules From PW Store<\/span><\/a><span style=\"font-weight: 400;\">\u00a0<\/span><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 50.5357%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/store.pw.live\/govt-entrance-exams\/upsc-books\/upsc-previous-year-papers?utm_source=SEO&#038;utm_medium=PW+Live&#038;utm_campaign=UPSC+Previous+Year+Papers\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Check Out Previous Years Papers From PW Store<\/span><\/a><\/td>\n<td style=\"width: 80.2753%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/pwonlyias.com\/stage\/upsc-test-series-courses\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">UPSC Test Series 2024<\/span><\/a><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 50.5357%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/pwonlyias.com\/stage\/quiz\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Daily Current Affairs Quiz<\/span><\/a><\/td>\n<td style=\"width: 80.2753%; text-align: center; border-style: solid; border-color: #000000;\"><a href=\"https:\/\/pwonlyias.com\/stage\/mains-answer-writing\/\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Daily Main Answer Writing<\/span><\/a><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 130.811%; text-align: center; border-style: solid; border-color: #000000;\" colspan=\"2\"><a href=\"https:\/\/store.pw.live\/govt-entrance-exams\/upsc-books?utm_source=SEO&#038;utm_medium=PW+Live&#038;utm_campaign=UPSC+CSE+Books\" target=\"_blank\" rel=\"noopener\"><span style=\"font-weight: 400;\">Check Out UPSC CSE Books From PW Store<\/span><\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<p><\/div>\n","protected":false},"excerpt":{"rendered":"<p>The Delhi High Court directed the Union Government to establish the National Fund for Rare Diseases (NFRD).<\/p>\n","protected":false},"author":11,"featured_media":0,"menu_order":0,"comment_status":"open","ping_status":"open","template":"","format":"standard","meta":{"rank_math_lock_modified_date":false,"footnotes":""},"tags":[],"paper-wise":[2084],"subject":[2124],"acf":[],"_links":{"self":[{"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/current-affairs\/136261"}],"collection":[{"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/current-affairs"}],"about":[{"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/types\/current-affairs"}],"author":[{"embeddable":true,"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/users\/11"}],"replies":[{"embeddable":true,"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/comments?post=136261"}],"version-history":[{"count":4,"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/current-affairs\/136261\/revisions"}],"predecessor-version":[{"id":136685,"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/current-affairs\/136261\/revisions\/136685"}],"wp:attachment":[{"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/media?parent=136261"}],"wp:term":[{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/tags?post=136261"},{"taxonomy":"paper-wise","embeddable":true,"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/paper-wise?post=136261"},{"taxonomy":"subject","embeddable":true,"href":"https:\/\/pwonlyias.com\/stage\/wp-json\/wp\/v2\/subject?post=136261"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}