{"id":9074,"date":"2021-01-13T11:40:20","date_gmt":"2021-01-13T14:40:20","guid":{"rendered":"https:\/\/academiadepacientes.com.br\/?p=9074"},"modified":"2021-01-13T11:40:20","modified_gmt":"2021-01-13T14:40:20","slug":"reino-unido-lanca-framework-ambicioso-em-doencas-raras","status":"publish","type":"post","link":"https:\/\/academiadepacientes.com.br\/?p=9074","title":{"rendered":"Reino Unido lan\u00e7a ‘framework’ ambicioso em doen\u00e7as raras"},"content":{"rendered":"

O Governo do Reino Unido (Inglaterra, Irlanda, Pa\u00eds de Gales e Esc\u00f3cia) acaba de publicar o documento intitulado UK Rare Diseases Framework (Estrutura do Reino Unido para Doen\u00e7as Raras).\u00a0<\/span><\/p>\n

Segundo seus criadores, ele tem por finalidade \u201cassegurar que as vidas das pessoas que vivem com doen\u00e7as raras continuem a melhorar\u201d. Pretende-se instaurar \u201cuma mudan\u00e7a positiva na forma como diagnosticamos, tratamos e cuidamos de pacientes com doen\u00e7as raras\u201d.<\/span><\/p>\n

O documento foi baseado na National Conversation on Rare Diseases (Conversa Nacional sobre Doen\u00e7as Raras), um levantamento ocorrido em 2019 e que colheu opini\u00f5es de associa\u00e7\u00f5es de pacientes, profissionais de sa\u00fade, pesquisadores e representantes da ind\u00fastria farmac\u00eautica, visando compreender as principais barreiras enfrentadas pela comunidade de doen\u00e7as raras.<\/span><\/p>\n

O Framework ora divulgado se alinha \u00e0 estrat\u00e9gia do Reino Unido para Doen\u00e7as Raras e define quatro prioridades fundamentais para os pr\u00f3ximos cinco anos, visando trazer mudan\u00e7as reais e concretas na vida dos pacientes.<\/span><\/p>\n

S\u00e3o elas:\u00a0<\/span><\/p>\n

    \n
  1. Auxiliar os pacientes a obterem um diagn\u00f3stico final mais r\u00e1pido<\/span><\/li>\n
  2. Aumentar a sensibiliza\u00e7\u00e3o para as doen\u00e7as raras entre os profissionais de sa\u00fade<\/span><\/li>\n
  3. Promover uma melhor coordena\u00e7\u00e3o de cuidados<\/span><\/li>\n
  4. Melhorar o acesso a cuidados especializados, tratamentos e medicamentos<\/span><\/li>\n<\/ol>\n

    O documento \u00e9 muito interessante e recomendamos fortemente sua leitura aos interessados na tem\u00e1tica. Infelizmente est\u00e1 em ingl\u00eas. Link abaixo:<\/span><\/p>\n

    https:\/\/www.gov.uk\/government\/publications\/uk-rare-diseases-framework\/the-uk-rare-diseases-framework#contents<\/span><\/a><\/p>\n

    Outros links \u00fateis:\u00a0<\/strong><\/p>\n

    https:\/\/www.genomicsengland.co.uk\/national-conversation-on-rare-diseases-survey\/<\/span><\/a><\/p>\n

    https:\/\/www.gov.uk\/government\/publications\/rare-diseases-strategy<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

    O Governo do Reino Unido (Inglaterra, Irlanda, Pa\u00eds de Gales e Esc\u00f3cia) acaba de publicar o documento intitulado UK Rare … <\/p>\n

    Saiba mais<\/a><\/p>\n","protected":false},"author":2,"featured_media":2543,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_uag_custom_page_level_css":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[92],"tags":[],"class_list":["post-9074","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-noticias","infinite-scroll-item","resize-featured-image"],"aioseo_notices":[],"uagb_featured_image_src":{"full":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1-scaled.jpg",2560,1707,false],"thumbnail":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:150\/h:150\/q:mauto\/rt:fill\/g:ce\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1.jpg",150,150,true],"medium":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:300\/h:200\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1.jpg",300,200,true],"medium_large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:768\/h:512\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1.jpg",768,512,true],"large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:1024\/h:683\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1.jpg",1024,683,true],"1536x1536":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:1536\/h:1024\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1.jpg",1536,1024,true],"2048x2048":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:1920\/h:1279\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1.jpg",2048,1365,true],"mailpoet_newsletter_max":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/02\/Canva-Man-Reading-a-Newspaper-1-scaled.jpg",1320,880,false]},"uagb_author_info":{"display_name":"Cl\u00e1udio Cordovil","author_link":"https:\/\/academiadepacientes.com.br\/?author=2"},"uagb_comment_info":0,"uagb_excerpt":"O Governo do Reino Unido (Inglaterra, Irlanda, Pa\u00eds de Gales e Esc\u00f3cia) acaba de publicar o documento intitulado UK Rare ... Saiba mais","_links":{"self":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/9074","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=9074"}],"version-history":[{"count":0,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/9074\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/media\/2543"}],"wp:attachment":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=9074"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=9074"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=9074"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}