{"id":13051,"date":"2025-02-05T09:02:53","date_gmt":"2025-02-05T03:32:53","guid":{"rendered":"https:\/\/vajiramandravi.com\/current-affairs\/?p=13051"},"modified":"2025-04-01T23:56:05","modified_gmt":"2025-04-01T18:26:05","slug":"national-policy-for-rare-diseases-2021","status":"publish","type":"post","link":"https:\/\/vajiramandravi.com\/current-affairs\/national-policy-for-rare-diseases-2021\/","title":{"rendered":"National Policy for Rare Diseases 2021"},"content":{"rendered":"<h2>National Policy for Rare Diseases Latest News<\/h2>\n<p>Several rare disease patients across India, including many children, are facing a life-or-death struggle due to delays in implementing the National Policy for Rare Diseases (NPRD) 2021, patient advocacy groups said recently.<\/p>\n<h2>About National Policy for Rare Diseases\u00a0<\/h2>\n<ul>\n<li>The <strong>Ministry of Health &amp; Family Welfare<\/strong> launched the National Policy for Rare Diseases (NPRD) in March 2021.<\/li>\n<li>Currently, <strong>63 rare diseases are included<\/strong> under the National Policy for Rare Diseases on the recommendation of the Central Technical Committee for Rare Diseases (CTCRD).<\/li>\n<\/ul>\n<h2>National Policy for Rare Diseases Features<\/h2>\n<ul>\n<li>The rare diseases have been identified and <strong>categorized into 3 groups.<\/strong>\n<ul>\n<li><strong>Group 1: Disorders amenable to one-time curative treatment.<\/strong><\/li>\n<li><strong>Group 2:<\/strong> Diseases <strong>requiring long-term<\/strong>\/lifelong treatment with relatively <strong>lower cost of treatment.<\/strong><\/li>\n<li><strong>Group 3:<\/strong> Diseases for which <strong>definitive treatment is available<\/strong> but challenges are to make optimal patient selection for benefit, <strong>very high cost, <\/strong>and <strong>lifelong therapy<\/strong>.<\/li>\n<\/ul>\n<\/li>\n<li>F<strong>inancial support of up to Rs. 50 lakhs per patient <\/strong>is provided for the <strong>treatment at the notified Centres of Excellence (CoEs) for Rare Diseases.<\/strong><\/li>\n<li><strong>12 Centres of Excellence (CoEs) have been identified<\/strong> so far, which are premier Government tertiary hospitals with facilities for diagnosis, prevention, and treatment of rare diseases.<\/li>\n<li>In order to receive financial assistance for treatment of rare disease, the patient may approach a nearby or any CoE to get registered.<\/li>\n<li><strong>Treatment <\/strong>of patients <strong>starts immediately after registration with the CoEs.<\/strong><\/li>\n<li><strong>Nidan Kendras <\/strong>have been set up <strong>for genetic testing and counselling <\/strong>services.<\/li>\n<li>The Ministry of Health and Family Welfare has obtained <strong>exemption from the <\/strong>Department of Expenditure on Goods &amp; Services Tax (<strong>GST) and Basic Customs Duty on drugs imported for Rare Diseases<\/strong> for individual use and through CoE.<\/li>\n<li>As envisaged in the policy, the Department of Health Research has <strong>established the National Consortium for Research and Development on Therapeutics for Rare Diseases (NCRDTRD) <\/strong>for streamlining the research activities for rare diseases.<\/li>\n<li>It has p<strong>rovisions for the promotion of research and development <\/strong>for diagnosis and treatment of rare diseases; promotion of <strong>local development and manufacture of drugs; <\/strong>and creation of a conducive environment for indigenous manufacturing of drugs for rare diseases at affordable prices.<\/li>\n<\/ul>\n<h2>National Policy for Rare Diseases FAQs<\/h2>\n<p><strong>Q1<\/strong>. What is the national database for rare diseases?<\/p>\n<p><strong>Ans<\/strong>. This database from the National Organization for Rare Disorders contains reports on more than 1,200 rare disorders.\u00a0<\/p>\n<p><strong>Q2<\/strong>. What are some examples of rare diseases in India?<\/p>\n<p><strong>Ans<\/strong>. Some examples of rare diseases in India include Osteopetrosis, Laron\u2019s Syndrome, Fabry disease, Prader Willi Syndrome, Cystic Fibrosis etc.<\/p>\n<p><strong>Q3<\/strong>. What are the causes of rare diseases?<\/p>\n<p><strong>Ans<\/strong>. The causes of rare diseases include genetic mutations, environmental factors, infections, immune system disorders, metabolic abnormalities, and sometimes chromosomal abnormalities or unknown factors.<\/p>\n<p><strong>Source<\/strong>: <a href=\"https:\/\/www.indiatoday.in\/india\/story\/rare-disease-patients-crisis-delays-stall-national-policy-implementation-2672197-2025-01-30\" target=\"_blank\" rel=\"nofollow noopener\">IT<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>National Policy for Rare Diseases (NPRD) 2021 was launched by the Ministry of Health &#038; Family Welfare in March 2021.<\/p>\n","protected":false},"author":5,"featured_media":13052,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":{"0":"post-13051","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-upsc-prelims-current-affairs","8":"no-featured-image-padding"},"acf":[],"_links":{"self":[{"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/posts\/13051","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/users\/5"}],"replies":[{"embeddable":true,"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/comments?post=13051"}],"version-history":[{"count":0,"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/posts\/13051\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/media\/13052"}],"wp:attachment":[{"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/media?parent=13051"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/categories?post=13051"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/vajiramandravi.com\/current-affairs\/wp-json\/wp\/v2\/tags?post=13051"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}