{"id":7608,"date":"2017-04-28T12:50:49","date_gmt":"2017-04-28T10:50:49","guid":{"rendered":"http:\/\/dev-leitat-projects-blog.pantheonsite.io\/?p=7608"},"modified":"2025-02-10T11:23:56","modified_gmt":"2025-02-10T11:23:56","slug":"batcure-newsletter-developing-first-effective-treatment-patients-living-batten-disease","status":"publish","type":"post","link":"https:\/\/leitat.org\/es\/blog\/batcure-newsletter-developing-first-effective-treatment-patients-living-batten-disease\/","title":{"rendered":"BATCure Newsletter: first effective treatment for patients living with Batten disease"},"content":{"rendered":"<p style=\"text-align: justify;\">Welcome to the first edition of the BATCure Newsletter. Our goal is to keep you informed about progress on the BATCure project and to provide some insight into the BATCure-funded research taking place at institutions across the EU. BATCure is a 3-year research project funded by the European Union\u00e2\u20ac\u2122s Horizon 2020 Research and Innovation Programme. The project began in January 2016 and is progressing as planned with a great deal of research already undertaken by the project consortium. With new disease models now established, 2017 should herald further progress towards the project goal of developing the first effective treatment for patients living with Batten disease.<\/p>\n<p style=\"text-align: justify;\">Whilst BATCure focusses on the development of new therapies for CLN3, CLN6 and CLN7, our hope is that the research results will ultimately be of benefit to patients affected by all forms of Batten disease. The BATCure project consortium is comprised of 14 institutions across the EU; ten leading scientific research groups, three companies and the Batten Disease Family Association (BDFA). The BDFA is leading part of the project as well as ensuring that the voice of patients and affected families is heard. In the next few months, parents\/carers of affected children will be invited to share their thoughts by participating in a family survey. Further details can be found on the back cover of this newsletter.<\/p>\n<p style=\"text-align: justify;\">In each edition of the BATCure Newsletter, we will shine a spotlight on some of the institutions involved in BATCur and the individuals who work there, exploring their roles in the project.<\/p>\n<p style=\"text-align: justify;\">Click <a href=\"\/wp-content\/uploads\/2024\/12\/BATCure-Spring-Newsletter-2017.pdf\" target=\"_blank\" rel=\"noopener noreferrer\"><strong>here<\/strong><\/a> to read the full BATCure Newsletter!<\/p>\n<p>Also, two more news items of interest:<\/p>\n<ul>\n<li><a href=\"\/wp-content\/uploads\/2024\/12\/BDFA-Spring-Newsletter-2017.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">The Batten Disease Family Association (BDFA) Spring Newsletter<\/a><\/li>\n<li><a href=\"\/wp-content\/uploads\/2024\/12\/BDFA-Spring-Bulletin-2017.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">The Batten Disease Familiy Association (BDFA) Spring Bulletin<\/a><\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Welcome to the first edition of the BATCure Newsletter. Our goal is to keep you informed about progress on the BATCure project and to provide some insight into the BATCure-funded research taking place at institutions across the EU. BATCure is a 3-year research project funded by the European Union\u00e2\u20ac\u2122s Horizon 2020 Research and Innovation Programme. [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":7609,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[14],"tags":[],"class_list":["post-7608","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health-technologies"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>BATCure Newsletter: developing the first effective treatment for patients living with Batten disease<\/title>\n<meta name=\"description\" content=\"Welcome to the first edition of the BATCure Newsletter to keep you informed about progress on the BATCure project and provide insight into BATCure research\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" 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