{"id":4752,"date":"2019-10-25T08:09:40","date_gmt":"2019-10-25T08:09:40","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/10\/25\/feder-en-la-jornada-sobre-designacion-desarrollo-y-acceso-a-medicamentos-huerfanos\/"},"modified":"2019-10-25T08:09:40","modified_gmt":"2019-10-25T08:09:40","slug":"feder-en-la-jornada-sobre-designacion-desarrollo-y-acceso-a-medicamentos-huerfanos","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/10\/25\/feder-en-la-jornada-sobre-designacion-desarrollo-y-acceso-a-medicamentos-huerfanos\/","title":{"rendered":"FEDER, en la Jornada sobre Designaci\u00f3n, Desarrollo y Acceso a Medicamentos Hu\u00e9rfanos"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>El pasado 21 de octubre se celebr\u00f3 en la Universidad de Deusto, la jornada sobre Designaci\u00f3n, desarrollo y acceso de medicamentos hu\u00e9rfanos, en la que tuvimos el honor de participar en la inauguraci\u00f3n del evento al estar representados por Juana Mar\u00eda Sa\u00e9nz Rodr\u00edguez, Miembro de la Junta Directiva de FEDER.<\/p>\n<p><span style=\"font-size: 12pt\">\u00bfQu\u00e9 es la designaci\u00f3n?<\/span><\/p>\n<p>La designaci\u00f3n de medicamento hu\u00e9rfano se solicita de forma voluntaria y libre de coste porque con ella pueden beneficiarse de los incentivos contemplados en la regulaci\u00f3n, sin los cuales muy probablemente la comercializaci\u00f3n de dicho medicamento no generar\u00eda suficientes ingresos para justificar la inversi\u00f3n necesaria. Esta designaci\u00f3n nos indica que el medicamento cumple con la definici\u00f3n de hu\u00e9rfano establecida por la Comisi\u00f3n Europea.<\/p>\n<p><span style=\"font-size: 12pt\">Conoce m\u00e1s sobre la Jornada<\/span><\/p>\n<p>El acto abord\u00f3 los medicamentos \u201chu\u00e9rfanos\u201d, aquellos destinados a tratar enfermedades que, por su rareza no resultan atractivos a los patrocinadores, ya que no se recuperar\u00eda el capital invertido en la investigaci\u00f3n y en el desarrollo del producto.<\/p>\n<p>En esta ocasi\u00f3n, expertos en investigaci\u00f3n, profesionales sanitarios y empresas farmac\u00e9uticos se dieron cita para explicar el proceso de designaci\u00f3n de los medicamentos a los pacientes, los tr\u00e1mites para acceder a ellos, los beneficios de este proceso. Adem\u00e1s, se abord\u00f3 la investigaci\u00f3n y desarrollo de medicamentos hu\u00e9rfanos, la continuidad de los investigadores y se traslad\u00f3 el inter\u00e9s de la industria. Por \u00faltimo, se pudo trasladar las experiencias en la designaci\u00f3n, exponiendo casos de enfermedades poco frecuentes como la Porfiria o la Anemia de Falconi.<\/p>\n<p>A trav\u00e9s de jornadas como estas se consiguen impulsar el conocimiento sobre posibles tratamientos, los cuales son m\u00e1s de la mitad de las familias encuentran dificultades a la hora de acceder a ellos. Gracias a esta iniciativa se consigue impulsar la cobertura de las necesidades comunes del colectivo de pacientes que conviven con alguna enfermedad poco frecuente.<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/13105-feder%2C-en-la-jornada-sobre-designaci%C3%B3n%2C-desarrollo-y-acceso-a-medicamentos-hu%C3%A9rfanos\" target=\"_blank\" rel=\"noopener noreferrer\">FEDER, en la Jornada sobre Designaci\u00f3n, Desarrollo y Acceso a Medicamentos Hu\u00e9rfanos<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El pasado 21 de octubre se celebr\u00f3 en la Universidad de Deusto, la jornada sobre Designaci\u00f3n, desarrollo y acceso de medicamentos hu\u00e9rfanos, en la que tuvimos el honor de participar en la inauguraci\u00f3n del evento al estar representados por Juana Mar\u00eda Sa\u00e9nz Rodr\u00edguez, [&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-4752","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - 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