{"id":2705,"date":"2021-10-21T17:51:26","date_gmt":"2021-10-21T15:51:26","guid":{"rendered":"https:\/\/www.socesfar.es\/convenio-de-colaboracion-con-el-observatorio-legislativo-de-enfermedades-raras-y-medicamentos-huerfanos-iniciativa-apoyada-por-alexion-pharmaceuticals-inc\/"},"modified":"2021-10-21T17:55:19","modified_gmt":"2021-10-21T15:55:19","slug":"convenio-de-colaboracion-con-el-observatorio-legislativo-de-enfermedades-raras-y-medicamentos-huerfanos-iniciativa-apoyada-por-alexion-pharmaceuticals-inc","status":"publish","type":"post","link":"https:\/\/www.socesfar.es\/en\/convenio-de-colaboracion-con-el-observatorio-legislativo-de-enfermedades-raras-y-medicamentos-huerfanos-iniciativa-apoyada-por-alexion-pharmaceuticals-inc\/","title":{"rendered":"Collaboration agreement with the Legislative Observatory for Rare Diseases and Orphan Drugs, an initiative supported by Alexion Pharmaceuticals, Inc."},"content":{"rendered":"\n<p>SEF has just signed a collaboration agreement with the <a href=\"https:\/\/centroestudiospoliticaspublicas.com\/observatorio-legislativo-de-enfermedades-raras\/\">Legislative Observatory of Rare Diseases and Orphan Drugs,<\/a> an initiative supported by \u00a0<a href=\"https:\/\/alexion.com\/\"><strong>Alexion Pharmaceuticals, Inc.\u00a0<\/strong><\/a>&#13;\n&#13;\nThis observatory is made up of experts from different disciplines and is under the umbrella of the <a href=\"https:\/\/centroestudiospoliticaspublicas.com\/observatorio-legislativo-de-enfermedades-raras\/\">Center for Studies of Public Policies and Government (CEPPyG)<\/a> of the General University of Alcal\u00e1 Foundation.<\/p>\n\n<p>The mission of this Legislative Observatory is to be able to identify the main legislative challenges that must be answered to improve the quality of life of patients with rare diseases and their families.<\/p>\n\n<p>Under the agreement signed, our Society will collaborate in the Observatory of Rare Diseases and Orphan Drugs, with the following activities, whenever possible:<\/p>\n\n<ul class=\"wp-block-list\"><li>Attendance and participation in face-to-face\/telematic meetings of the Observatory.<\/li><li>Active participation in the preparation of executive reports<\/li><li>Validation of the documents prepared by the Observatory<\/li><li>Participation in public presentations of executive reports.<\/li><\/ul>\n<p>   You can find more information about it in the following link:<\/p>\n\n<p>#enfermedadesraras #medicamentoshuerfanos #3millonesyanoesraro<\/p>\n","protected":false},"excerpt":{"rendered":"<p>SEF has just signed a collaboration agreement with the Legislative Observatory of Rare Diseases and Orphan Drugs, an initiative supported by \u00a0Alexion Pharmaceuticals, Inc.\u00a0&#13; &#13; This observatory is made up of experts from different disciplines and is under the umbrella of the Center for Studies of Public Policies and Government (CEPPyG) of the General University &#8230; <a title=\"Collaboration agreement with the Legislative Observatory for Rare Diseases and Orphan Drugs, an initiative supported by Alexion Pharmaceuticals, Inc.\" class=\"read-more\" href=\"https:\/\/www.socesfar.es\/en\/convenio-de-colaboracion-con-el-observatorio-legislativo-de-enfermedades-raras-y-medicamentos-huerfanos-iniciativa-apoyada-por-alexion-pharmaceuticals-inc\/\" aria-label=\"More on Collaboration agreement with the Legislative Observatory for Rare Diseases and Orphan Drugs, an initiative supported by Alexion Pharmaceuticals, Inc.\">Read more<\/a><\/p>\n","protected":false},"author":3,"featured_media":2702,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[47],"tags":[],"class_list":["post-2705","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news-en"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Collaboration agreement with the Legislative Observatory for Rare Diseases and Orphan Drugs, an initiative supported by Alexion Pharmaceuticals, Inc. - Sociedad Espa\u00f1ola de Farmacolog\u00eda<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.socesfar.es\/en\/convenio-de-colaboracion-con-el-observatorio-legislativo-de-enfermedades-raras-y-medicamentos-huerfanos-iniciativa-apoyada-por-alexion-pharmaceuticals-inc\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Collaboration agreement with the Legislative Observatory for Rare Diseases and Orphan Drugs, an initiative supported by Alexion Pharmaceuticals, Inc. - Sociedad Espa\u00f1ola de Farmacolog\u00eda\" \/>\n<meta property=\"og:description\" content=\"SEF has just signed a collaboration agreement with the Legislative Observatory of Rare Diseases and Orphan Drugs, an initiative supported by \u00a0Alexion Pharmaceuticals, Inc.\u00a0&#013; 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