{"id":8976,"date":"2020-12-07T15:44:03","date_gmt":"2020-12-07T18:44:03","guid":{"rendered":"https:\/\/academiadepacientes.com.br\/?p=8976"},"modified":"2020-12-07T15:45:52","modified_gmt":"2020-12-07T18:45:52","slug":"associacoes-de-pacientes-repudiam-criacao-de-comite-interministerial-de-doencas-raras","status":"publish","type":"post","link":"https:\/\/academiadepacientes.com.br\/?p=8976","title":{"rendered":"Associa\u00e7\u00f5es de pacientes repudiam cria\u00e7\u00e3o de Comit\u00ea Interministerial de Doen\u00e7as Raras"},"content":{"rendered":"

 <\/p>\n

A<\/span> Alian\u00e7a Rara Rio (ARAR), que congrega associa\u00e7\u00f5es de pacientes com doen\u00e7as raras sediadas no Rio de Janeiro, divulgou hoje (7\/12) nota de rep\u00fadio ao Decreto 10.558 de 3\/12\/2020<\/a>, que institui o Comit\u00ea Interministerial de Doen\u00e7as Raras, criticando a falta de transpar\u00eancia da iniciativa e, sobretudo, de representatividade no que se refere \u00e0s pessoas que convivem diariamente com estas enfermidades<\/p>\n

A nota destaca o estranhamento suscitado pela leitura do \u00a75 do art. 4 do referido decreto, onde se l\u00ea:<\/p>\n

\n

\u00c9 vedada a divulga\u00e7\u00e3o de discuss\u00f5es em curso no \u00e2mbito do Comit\u00ea Interministerial de Doen\u00e7as Raras sem a pr\u00e9via anu\u00eancia de seu Coordenador.<\/strong><\/p>\n<\/blockquote>\n

A ARAR congrega 23 associa\u00e7\u00f5es de pacientes.<\/p>\n

Leia o teor da nota abaixo.<\/p>\n[pdf-embedder url=”https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/12\/NOTA-PUBLICA-DA-ARAR-SOBRE-O-DECRETO-11.pdf” title=”NOTA P\u00daBLICA DA ARAR SOBRE O DECRETO 11″]\n","protected":false},"excerpt":{"rendered":"

  Alian\u00e7a Rara Rio (ARAR), que congrega associa\u00e7\u00f5es de pacientes com doen\u00e7as raras sediadas no Rio de Janeiro, divulgou hoje … <\/p>\n

Saiba mais<\/a><\/p>\n","protected":false},"author":2,"featured_media":8978,"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-8976","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\/12\/nada-sobre-nos.jpg",1080,1080,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\/12\/nada-sobre-nos.jpg",150,150,true],"medium":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:300\/h:300\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/12\/nada-sobre-nos.jpg",300,300,true],"medium_large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:768\/h:768\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/12\/nada-sobre-nos.jpg",768,768,true],"large":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:1024\/h:1024\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/12\/nada-sobre-nos.jpg",1024,1024,true],"1536x1536":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/12\/nada-sobre-nos.jpg",1080,1080,false],"2048x2048":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/12\/nada-sobre-nos.jpg",1080,1080,false],"mailpoet_newsletter_max":["https:\/\/mlzfzsux7b5d.i.optimole.com\/w:auto\/h:auto\/q:mauto\/f:best\/https:\/\/academiadepacientes.com.br\/wp-content\/uploads\/2020\/12\/nada-sobre-nos.jpg",1080,1080,false]},"uagb_author_info":{"display_name":"Cl\u00e1udio Cordovil","author_link":"https:\/\/academiadepacientes.com.br\/?author=2"},"uagb_comment_info":0,"uagb_excerpt":"  Alian\u00e7a Rara Rio (ARAR), que congrega associa\u00e7\u00f5es de pacientes com doen\u00e7as raras sediadas no Rio de Janeiro, divulgou hoje ... Saiba mais","_links":{"self":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/8976","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=8976"}],"version-history":[{"count":0,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/posts\/8976\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=\/wp\/v2\/media\/8978"}],"wp:attachment":[{"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=8976"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=8976"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/academiadepacientes.com.br\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=8976"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}