{"id":1311,"date":"2019-11-01T14:09:13","date_gmt":"2019-11-01T14:09:13","guid":{"rendered":"https:\/\/blogs.ncl.ac.uk\/katarzynapirog\/?p=1311"},"modified":"2019-11-01T14:09:14","modified_gmt":"2019-11-01T14:09:14","slug":"join-the-national-conversation-on-rare-diseases","status":"publish","type":"post","link":"https:\/\/blogs.ncl.ac.uk\/piroglab\/2019\/11\/01\/join-the-national-conversation-on-rare-diseases\/","title":{"rendered":"Join the National Conversation on Rare Diseases"},"content":{"rendered":"\n<p style=\"text-align:justify\">In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a \u2018national conversation\u2019 on rare disease. This conversation aims to gather a range of views from the rare disease community.\u00a0 The views collected from patients,  families  and carers, healthcare professionals (including GPs, specialist rare disease clinicians, clinical academics)\u00a0and industry will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases. This will follow on from the current\u00a0<a rel=\"noreferrer noopener\" href=\"https:\/\/www.gov.uk\/government\/publications\/rare-diseases-strategy\" target=\"_blank\">UK Rare Diseases Strategy<\/a>\u00a0which expires at the end of 2020.<\/p>\n\n\n\n<p style=\"text-align:justify\"><br> To start the conversation, a survey has been launched to understand the major barriers that healthcare professionals working with rare diseases face. Make sure your voice is heard by completing <a rel=\"noreferrer noopener\" href=\"https:\/\/dhsc-mail.co.uk\/form\/Sx1iaZDJ\/12fe439d08333dcf0e23be36\/\" target=\"_blank\">this short survey<\/a> by <strong>Friday 29<sup>th<\/sup>\u00a0November 2019<\/strong>.  <\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a \u2018national conversation\u2019 on rare disease. This conversation aims to gather a range of views from the rare disease community.\u00a0 The views collected from patients, families and carers, healthcare professionals (including GPs, specialist rare disease clinicians, clinical &hellip; <a href=\"https:\/\/blogs.ncl.ac.uk\/piroglab\/2019\/11\/01\/join-the-national-conversation-on-rare-diseases\/\" class=\"more-link\">Continue reading <span class=\"screen-reader-text\">Join the National Conversation on Rare Diseases<\/span> <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":4483,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7,11],"tags":[],"class_list":["post-1311","post","type-post","status-publish","format-standard","hentry","category-events-for-the-public","category-musculoskeletal-news"],"_links":{"self":[{"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/posts\/1311","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/users\/4483"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/comments?post=1311"}],"version-history":[{"count":1,"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/posts\/1311\/revisions"}],"predecessor-version":[{"id":1312,"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/posts\/1311\/revisions\/1312"}],"wp:attachment":[{"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/media?parent=1311"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/categories?post=1311"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.ncl.ac.uk\/piroglab\/wp-json\/wp\/v2\/tags?post=1311"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}