{"id":4186,"date":"2018-10-18T18:47:37","date_gmt":"2018-10-18T16:47:37","guid":{"rendered":"https:\/\/f101g.org\/un-dialogo-ciudadano-sobre-el-genoma-por-gerrit-rauws-frb\/"},"modified":"2018-10-18T18:47:37","modified_gmt":"2018-10-18T16:47:37","slug":"un-dialogo-ciudadano-sobre-el-genoma-por-gerrit-rauws-frb","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/un-dialogo-ciudadano-sobre-el-genoma-por-gerrit-rauws-frb\/","title":{"rendered":"\u00abUn di\u00e1logo ciudadano sobre el genoma\u00bb por Gerrit Rauws (FRB)"},"content":{"rendered":"<h4>1. \u00bfPodr\u00eda presentarse?<\/h4>\n<p>Me llamo Gerrit Rauws. Soy director del programa de salud de la Fundaci\u00f3n Rey Balduino. Ayudamos a los fil\u00e1ntropos a hacer realidad sus objetivos y proyectos para el bien com\u00fan. Tambi\u00e9n desarrollamos proyectos para mejorar la asistencia sanitaria y la calidad de vida de los pacientes. Dentro de la Fundaci\u00f3n Rey Balduino, el Fondo de Enfermedades Raras y Medicamentos Hu\u00e9rfanos tambi\u00e9n es muy eficaz a la hora de ofrecer una plataforma de consulta a quienes trabajan en B\u00e9lgica para mejorar el diagn\u00f3stico y el tratamiento de las enfermedades raras.<\/p>\n<h4>2. \u00bfPor qu\u00e9 se interesa la Fundaci\u00f3n Rey Balduino por la gen\u00f3mica?&nbsp;<\/h4>\n<p>La mayor\u00eda de las enfermedades raras tienen un origen gen\u00e9tico. Un mejor conocimiento de la gen\u00f3mica conducir\u00e1 sin duda a un mejor diagn\u00f3stico y podr\u00eda orientar el desarrollo de nuevos f\u00e1rmacos. El FRB financia la investigaci\u00f3n cient\u00edfica sobre el origen gen\u00e9tico del c\u00e1ncer de p\u00e1ncreas y varias enfermedades raras. Pero tambi\u00e9n nos interesan los aspectos sociales de la secuenciaci\u00f3n del genoma. A <u>petici\u00f3n de la Ministra de Sanidad, hemos organizado un di\u00e1logo con los ciudadanos sobre las posibilidades de la secuenciaci\u00f3n gen\u00f3mica, pero tambi\u00e9n sobre las cuestiones que se plantean en materia de confidencialidad y solidaridad<\/u>.<\/p>\n<h4>3. \u00bfPor qu\u00e9 apoya el Proyecto Marfan de 101 Genomas?<\/h4>\n<p>Ludivine Verboogen y Romain Alderweireldt nos presentaron su proyecto de forma muy convincente, innovadora y pertinente, con mucho dinamismo. Estuvieron rodeados de investigadores de alto nivel, as\u00ed como de representantes de asociaciones de pacientes y numerosos expertos. Estoy muy impresionado por su enfoque sistem\u00e1tico. A trav\u00e9s del Fondo 101 Genomas, presidido por la profesora Anne De Paepe, intentamos ayudarles a completar este proyecto lo antes posible.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>1. \u00bfPodr\u00eda presentarse? Me llamo Gerrit Rauws. Soy director del programa de salud de la Fundaci\u00f3n Rey Balduino. 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