{"id":1137,"date":"2017-08-31T10:16:47","date_gmt":"2017-08-31T09:16:47","guid":{"rendered":"http:\/\/www.glycogenoses.org\/?p=1137"},"modified":"2021-03-20T17:09:49","modified_gmt":"2021-03-20T16:09:49","slug":"rare-barometer-voices-resultats-de-lenquete-lacces-traitement-acces-inegal-patients-europeens-atteint-de-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.glycogenoses.org\/st_qlfctn\/rare-barometer-voices-resultats-de-lenquete-lacces-traitement-acces-inegal-patients-europeens-atteint-de-maladies-rares\/","title":{"rendered":"Rare Barometer Voices &#8211; R\u00e9sultats de l&rsquo;enqu\u00eate sur l&rsquo;Acc\u00e8s au traitement"},"content":{"rendered":"<p><strong>Rare Barometer Voices<\/strong> est une initiative d\u2019 EURORDIS-Maladies Rares, organisation europ\u00e9enne \u00e0 but non lucratif.<\/p>\n<p>Elle a \u00e9t\u00e9 cr\u00e9\u00e9e pour renforcer la voix des patients atteints de maladie rare en collectant leur opinion \u00e0 travers des sondages en ligne. Les r\u00e9sultats sont ensuite communiqu\u00e9s au grand public et aux politiques pour contribuer \u00e0 la prise de conscience sur la situations des patients atteints de maladie rare en Europe.<\/p>\n<p>Le site a mis en ligne <a href=\"http:\/\/download2.eurordis.org.s3.amazonaws.com\/Access%20to%20treatment\/access%20to%20treatment%20FR.pdf\">les r\u00e9sultats sur sa derni\u00e8re enqu\u00eate concernant l&rsquo;Acc\u00e8s au traitement<\/a> : un acc\u00e8s in\u00e9gal pour les patients europ\u00e9ens atteint de maladies rares:<\/p>\n<p>En ligne \u00e9galement <a href=\"http:\/\/download2.eurordis.org.s3.amazonaws.com\/rbv\/RBV_impact_rarediseases_FR.pdf\">les r\u00e9sultats concernant la pr\u00e9c\u00e9dente enqu\u00eate sur l&rsquo;Impact des maladies rares dans notre quotidien<\/a>:<\/p>\n<p>&nbsp;<\/p>\n<p>N\u2019h\u00e9sitez pas \u00e0 faire entendre votre voix !<\/p>\n<p><a href=\"http:\/\/www.eurordis.org\/voices\/fr\">http:\/\/www.eurordis.org\/voices\/fr<\/a><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Rare Barometer Voices est une initiative d\u2019 EURORDIS-Maladies Rares, organisation europ\u00e9enne \u00e0 but non lucratif. Elle a \u00e9t\u00e9 cr\u00e9\u00e9e pour renforcer la voix des patients atteints de maladie rare en collectant leur opinion \u00e0 travers des sondages en ligne. Les r\u00e9sultats sont ensuite communiqu\u00e9s au grand public et aux politiques pour contribuer \u00e0 la priseLeer M\u00e1s<\/p>\n","protected":false},"author":7,"featured_media":952,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[12],"tags":[],"_links":{"self":[{"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/posts\/1137"}],"collection":[{"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/comments?post=1137"}],"version-history":[{"count":6,"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/posts\/1137\/revisions"}],"predecessor-version":[{"id":2522,"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/posts\/1137\/revisions\/2522"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/media\/952"}],"wp:attachment":[{"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/media?parent=1137"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/categories?post=1137"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.glycogenoses.org\/st_qlfctn\/wp-json\/wp\/v2\/tags?post=1137"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}