{"id":4199,"date":"2019-02-04T08:09:46","date_gmt":"2019-02-04T08:09:46","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/02\/04\/convocatoria-de-prensa-la-federacion-espanola-de-fq-se-reune-con-la-direccion-general-de-farmacia\/"},"modified":"2019-02-04T08:09:46","modified_gmt":"2019-02-04T08:09:46","slug":"convocatoria-de-prensa-la-federacion-espanola-de-fq-se-reune-con-la-direccion-general-de-farmacia","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/02\/04\/convocatoria-de-prensa-la-federacion-espanola-de-fq-se-reune-con-la-direccion-general-de-farmacia\/","title":{"rendered":"Convocatoria de prensa: la Federaci\u00f3n Espa\u00f1ola de FQ se re\u00fane con la Direcci\u00f3n General de Farmacia"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Fuente: <span style=\"text-decoration: underline\"><a href=\"https:\/\/fibrosisquistica.org\/\" target=\"_blank\">Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica<\/a><\/span> | Blanca Ruiz, presidenta de la Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica, se reunir\u00e1 con la directora general de Farmacia Patricia Lacruz para tratar el tema de los nuevos tratamientos para esta enfermedad poco frecuentes y, a continuaci\u00f3n, ofrecer\u00e1 declaraciones&nbsp;sobre la situaci\u00f3n del f\u00e1rmaco.<\/p>\n<p>Fecha: Martes, 5 de febrero de 2019<br \/>Hora: 11:00 horas<br \/>Lugar: Ministerio de Sanidad (Paseo del Prado, 18)<\/p>\n<p>Participan: <br \/>\u2022 Blanca Ruiz, presidenta de la FEFQ y adulta con Fibrosis Qu\u00edstica<br \/>\u2022 Juan Da Silva, vicepresidente de la FEFQ y padre de una ni\u00f1a con Fibrosis Qu\u00edstica que est\u00e1 tomando Orkambi<br \/>\u2022 Fernando Moreno, vicepresidente de la FEFQ y adulto con FQ<br \/>\u2022 Cristina Simal, secretaria de la FEFQ y adulta con Fibrosis Qu\u00edstica actualmente en tratamiento con Symkevi.<\/p>\n<p>Tras la pasada reuni\u00f3n mantenida con el departamento de Cartera B\u00e1sica de Servicios y Farmacia, en la que no estuvo presente la directora general, se ha convocado de nuevo a la Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica a una reuni\u00f3n urgente el pr\u00f3ximo martes 5 de febrero a la que s\u00ed est\u00e1 previsto que \u00e9sta asista.<\/p>\n<p>La reuni\u00f3n tendr\u00e1 lugar en el Ministerio de Sanidad de 10:00 a 11:00 horas y, al terminar la reuni\u00f3n, los miembros de la FEFQ atender\u00e1n a los medios de comunicaci\u00f3n all\u00ed presentes para explicarles lo tratado durante la misma.<\/p>\n<p>Hace m\u00e1s de tres a\u00f1os que esperamos la financiaci\u00f3n de un tratamiento aprobado por la Agencia Europea del Medicamento (EMA) en noviembre de 2015 y por la Agencia Espa\u00f1ola de Medicamentos y Productos Sanitarios (AEMPS) en julio de 2016, y mientras tanto, la salud de las personas con Fibrosis Qu\u00edstica contin\u00faa deterior\u00e1ndose.<\/p>\n<p>SE RUEGA CONFIRMACI\u00d3N: <br \/>647 390 356 \u2013 96 331 82 00 \u2013 fqprensa@hotmail.com<\/p>\n<h3>M\u00e1s informaci\u00f3n:<\/h3>\n<p>Estefan\u00eda Alabau de Lera<br \/>Responsable de comunicaci\u00f3n<br \/>Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica<br \/>C\/ Jos\u00e9 Mar\u00eda Haro, n\u00ba 14, 1\u00ba C<br \/>Telf.: 96 331 82 00<br \/>fqprensa@hotmail.com \/ <a href=\"http:\/\/www.fibrosisquistica.org\">www.fibrosisquistica.org<\/a><\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 04\/02\/2019.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/11709-convocatoria-de-prensa-la-federaci%C3%B3n-espa%C3%B1ola-de-fq-se-re%C3%BAne-con-la-direcci%C3%B3n-general-de-farmacia\" target=\"_blank\">Convocatoria de prensa: la Federaci\u00f3n Espa\u00f1ola de FQ se re\u00fane con la Direcci\u00f3n General de Farmacia<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Fuente: Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica | Blanca Ruiz, presidenta de la Federaci\u00f3n Espa\u00f1ola de Fibrosis Qu\u00edstica, se reunir\u00e1 con la directora general de Farmacia Patricia Lacruz para tratar el tema de los nuevos tratamientos para esta enfermedad poco frecuentes y, a continuaci\u00f3n, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4199","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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