{"id":2483,"date":"2021-11-04T08:47:43","date_gmt":"2021-11-04T07:47:43","guid":{"rendered":"https:\/\/pharmavalue.it\/?p=2483"},"modified":"2021-12-20T14:53:14","modified_gmt":"2021-12-20T13:53:14","slug":"summary-of-the-single-text-on-rare-diseases","status":"publish","type":"post","link":"https:\/\/pharmavalue.it\/en\/summary-of-the-single-text-on-rare-diseases\/","title":{"rendered":"Summary of the Consolidated Text on Rare Diseases"},"content":{"rendered":"<p>The <strong>26 May 2021<\/strong> The Chamber of Deputies, after more than two years of work in the Social Affairs Committee, has approved the bill promoting the support of research and production of orphan drugs and the treatment of rare diseases.<br \/>\nThe <strong>13 October 2021<\/strong> was announced<strong> unanimous approval of the Consolidated Text on Rare Diseases in the Senate Committee on Hygiene and Health<\/strong>.<br \/>\nThe <strong>3 November 2021<\/strong> was <strong>unanimously approved in committee in deliberation<\/strong>.<br \/>\nFrom the moment the law enters into force, with its publication in the Official Gazette, the 5 deadlines within which to produce the 5 acts necessary for the full implementation of the Consolidation Act will start to run:<\/p>\n<ul>\n<li>Establishment of the <strong>National Committee for Rare Diseases<\/strong> (within 2 months - MinSal decree)<\/li>\n<li>Establishment of the <strong>Solidarity Fund<\/strong> for persons suffering from rare diseases (within 3 months - Decree of the Ministry of Labour in agreement with the Ministry of Health and MEF)<\/li>\n<li>Agreements to be made by the State-Regions Conference: <strong>approval of the Second National Plan for Rare Diseases and reorganisation of the Network and definition of ways to ensure adequate information for health professionals, patients and families<\/strong> (within 3 months)<\/li>\n<li><strong>Ministry of Health Regulation<\/strong> (within 6 months)<\/li>\n<\/ul>\n<p><strong>Towards the end of 2022, we can begin to see the real effects of this law.<\/strong><\/p>\n<div class=\"_df_book df-lite\" id=\"df_2486\"  _slug=\"2486\" data-title=\"sintesi-del-testo-unico-sulle-malattie-rare\" wpoptions=\"true\" thumbtype=\"\" ><\/div><script class=\"df-shortcode-script\" nowprocket type=\"application\/javascript\">window.option_df_2486 = {\"outline\":[],\"backgroundColor\":\"eeeeee\",\"duration\":\"0\",\"autoEnableOutline\":\"false\",\"autoEnableThumbnail\":\"false\",\"overwritePDFOutline\":\"false\",\"enableDownload\":\"true\",\"direction\":\"1\",\"pageSize\":\"0\",\"pageMode\":\"1\",\"soundEnable\":\"false\",\"autoPlay\":\"false\",\"source\":\"https:\\\/\\\/pharmavalue.it\\\/wp-content\\\/uploads\\\/2021\\\/11\\\/Sintesi-testo-unico-malattie-rare.pdf\",\"wpOptions\":\"true\"}; if(window.DFLIP && window.DFLIP.parseBooks){window.DFLIP.parseBooks();}<\/script>\n<div class=\"_df_book df-lite\" id=\"df_2568\"  _slug=\"summary-on-rare-disease-law\" data-title=\"summary-on-rare-disease-law\" wpoptions=\"true\" thumbtype=\"\" ><\/div><script class=\"df-shortcode-script\" nowprocket type=\"application\/javascript\">window.option_df_2568 = {\"outline\":[],\"backgroundColor\":\"eeeeee\",\"duration\":\"0\",\"autoEnableOutline\":\"false\",\"autoEnableThumbnail\":\"false\",\"overwritePDFOutline\":\"false\",\"enableDownload\":\"true\",\"direction\":\"1\",\"pageSize\":\"0\",\"pageMode\":\"1\",\"soundEnable\":\"false\",\"autoPlay\":\"false\",\"source\":\"https:\\\/\\\/pharmavalue.it\\\/wp-content\\\/uploads\\\/2021\\\/11\\\/SUMMARY-ON-RARE-DISEASE-LAW.pdf\",\"wpOptions\":\"true\"}; if(window.DFLIP && window.DFLIP.parseBooks){window.DFLIP.parseBooks();}<\/script>","protected":false},"excerpt":{"rendered":"<p>Il 26 maggio 2021 la Camera, dopo oltre due anni di lavori in Commissione Affari Sociali, ha approvato la proposta di legge che promuove il sostegno della ricerca e della produzione dei farmaci orfani e della cura delle malattie rare. Il 13 ottobre 2021 \u00e8 stato annunciato l\u2019ok unanime al Testo Unico sulle malattie rare [&hellip;]<\/p>\n","protected":false},"author":314,"featured_media":2490,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","footnotes":""},"categories":[9,64],"tags":[60,62],"class_list":["post-2483","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-appunti","category-malattie-rare","tag-farmaci-orfani","tag-malattie-rare"],"_links":{"self":[{"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/posts\/2483","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/users\/314"}],"replies":[{"embeddable":true,"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/comments?post=2483"}],"version-history":[{"count":0,"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/posts\/2483\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/media\/2490"}],"wp:attachment":[{"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/media?parent=2483"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/categories?post=2483"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/pharmavalue.it\/en\/wp-json\/wp\/v2\/tags?post=2483"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}