{"id":1985,"date":"2016-09-27T07:48:05","date_gmt":"2016-09-27T07:48:05","guid":{"rendered":"http:\/\/sindromecharge.es\/index.php\/2016\/09\/27\/helpify-llega-a-murcia-te-esperamos\/"},"modified":"2016-09-27T07:48:05","modified_gmt":"2016-09-27T07:48:05","slug":"helpify-llega-a-murcia-te-esperamos","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2016\/09\/27\/helpify-llega-a-murcia-te-esperamos\/","title":{"rendered":"Helpify llega a Murcia, \u00a1te esperamos!"},"content":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

<\/p>\n

Tras presentar el proyecto en Catalu\u00f1a, FEDER y CIMA presentan en Pamplona el proyecto ‘Helpify’, una plataforma que nace para impulsar la investigaci\u00f3n de terapia g\u00e9nica para las enfermedades raras y buscar financiaci\u00f3n para iniciar nuevos estudios que logren la curaci\u00f3n de estos pacientes.<\/p>\n

Adriana es la primera protagonista de este proyecto que busca dar visibilidad a todas las ER. Se trata de una ni\u00f1a de 6 a\u00f1os que tiene s\u00edndrome de Dravet, una enfermedad gen\u00e9tica rara que provoca convulsiones generalizadas de duraci\u00f3n prolongada y que carece de tratamiento efectivo. Con ello como base, FEDER y el CIMA de la Universidad de Navarra presentan ‘Helpify’ el mi\u00e9rcoles 28 de septiembre en Navarra en un acto donde se presentar\u00e1n los \u00faltimos avances en terapia g\u00e9nica para estas enfermedades.<\/p>\n

Participan:<\/p>\n

\u2022 Dra. Gloria Gonz\u00e1lez, Directora del Programa de Terapia G\u00e9nica del CIMA.<\/p>\n

\u2022 David S\u00e1nchez, Delegado de la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) en Murcia.<\/p>\n

\u2022 Javier Vi\u00f1eta, director de Desarrollo Institucional del CIMA.<\/p>\n

La presentaci\u00f3n, abierta al p\u00fablico hasta completar aforo, tendr\u00e1 lugar a las 18:00 horas en el Centro Cultural de Churra . C\/ Mayor s\/n \u2013 Churra (Murcia).<\/p>\n

27\/09\/2016.<\/p>\n<\/p>\n

<\/strong><\/p>\n

Fuente: FEDER Helpify llega a Murcia, \u00a1te esperamos!<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Tras presentar el proyecto en Catalu\u00f1a, FEDER y CIMA presentan en Pamplona el proyecto ‘Helpify’, una plataforma que nace para impulsar la investigaci\u00f3n de terapia g\u00e9nica para las enfermedades raras y buscar financiaci\u00f3n para iniciar nuevos estudios que logren la curaci\u00f3n de estos […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[36],"class_list":["post-1985","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nHelpify llega a Murcia, \u00a1te esperamos! - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2016\/09\/27\/helpify-llega-a-murcia-te-esperamos\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Helpify llega a Murcia, \u00a1te esperamos! 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