{"id":5589,"date":"2016-07-01T00:00:00","date_gmt":"2016-06-30T22:00:00","guid":{"rendered":"https:\/\/idibell.cat\/en\/blog\/2020\/05\/01\/idibell-supporting-rare-disease-research\/"},"modified":"2020-05-05T09:42:44","modified_gmt":"2020-05-05T07:42:44","slug":"idibell-supporting-rare-disease-research","status":"publish","type":"post","link":"https:\/\/idibell.cat\/en\/2016\/07\/idibell-supporting-rare-disease-research\/","title":{"rendered":"IDIBELL, supporting rare disease research"},"content":{"rendered":"<p><strong>IDIBELL has endorsed the document of recommendations for finding solutions in the field of rare diseases by AELMHU and FEDER, and the Rett Syndrome awareness campaign &#8220;El Retto&#8221;<\/strong> The Bellvitge Institute of Biomedical Research (IDIBELL) has endorsed the <strong>document of recommendations for finding solutions in the field of rare diseases<\/strong>, an initiative promoted by the <a href=\"http:\/\/www.somospacientes.com\/feder\/\">Spanish Federation for Rare Diseases<\/a> (FEDER) and the <a href=\"http:\/\/aelmhu.es\/\">Spanish Association of Orphan and Ultraorphan Drug Laboratories<\/a> (AELMHU) through which the government is requested to implement measures to improve the <strong>quality of life<\/strong> of the <strong>three million<\/strong> affected by a rare disease. <\/p>\n<p> The recommendations document proposes <strong>measures<\/strong> to seek joint solutions to the problems affecting the group of rare diseases (RD) in our country, such as promoting general <strong>knowledge<\/strong> on rare diseases; supporting <strong>research<\/strong>, promoting the viability and sustainability of laboratories investigating rare diseases; achieving rapid <strong>and equitable access<\/strong> to diagnosis and appropriate treatment in the different CCAA, providing the necessary funding for each drug; and avoiding delays in decisions on <strong>financing and price<\/strong> of orphan drugs. <\/p>\n<p> Together with IDIBELL, there are 29 entities endorsing the document, which is to be forwarded to the Ministry of Health, Social Services and Equality. In this line, <strong>IDIBELL has also initiated a partnership with the web &#8220;The Retto&#8221; to explain and raise awareness of Rett syndrome<\/strong>, a rare disease that affects one in every 10,000 girls and that is investigated at IDIBELL by<\/p>\n<p> Dr. <strong>Manel Esteller<\/strong>\u2019s group coordinated by Dr. <strong>S\u00f2nia Guil<\/strong>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>IDIBELL has endorsed the document of recommendations for finding solutions in the field of rare diseases by AELMHU and FEDER, and the Rett Syndrome awareness campaign &#8220;El Retto&#8221; document of recommendations for finding solutions in the field of rare diseases quality of life three million measures knowledge research and equitable access financing and price IDIBELL has also initiated a partnership with the web &#8220;The Retto&#8221; to explain and raise awareness of Rett syndrome Manel Esteller S\u00f2nia Guil<\/p>\n","protected":false},"author":6,"featured_media":7839,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"default","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-gradient":""}},"footnotes":""},"categories":[],"tags":[],"publishpress_future_action":{"enabled":false,"date":"2024-05-08 22:23:57","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category"},"_links":{"self":[{"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/posts\/5589"}],"collection":[{"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/comments?post=5589"}],"version-history":[{"count":0,"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/posts\/5589\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/media\/7839"}],"wp:attachment":[{"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/media?parent=5589"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/categories?post=5589"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/idibell.cat\/en\/wp-json\/wp\/v2\/tags?post=5589"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}