{"id":2524,"date":"2023-06-06T13:55:15","date_gmt":"2023-06-06T11:55:15","guid":{"rendered":"https:\/\/f101g.org\/entrevista-conozca-al-jefe-radio-judaica\/"},"modified":"2026-08-11T14:09:35","modified_gmt":"2026-08-11T12:09:35","slug":"entrevista-conozca-al-jefe-radio-judaica","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/entrevista-conozca-al-jefe-radio-judaica\/","title":{"rendered":"Entrevista \u00abConozca al Jefe\u00bb Radio Judaica"},"content":{"rendered":"

El mi\u00e9rcoles 31 de mayo de 2023, Ludivine y Romain fueron invitados  por Olivier Sokolski y Laurent Poznantek a participar en el programa \u00abMeet the Boss\u00bb de Radio Judaica para presentar el trabajo de 101 G\u00e9nomes y compartir su visi\u00f3n de la investigaci\u00f3n de las enfermedades raras. <\/p>\n

Durante este programa, Ludivine y Romain hablaron del s\u00edndrome de Marfan y del descubrimiento de genes modificadores, que est\u00e1 en la base del modelo de investigaci\u00f3n que han puesto en marcha.<\/p>\n

Este modelo se basa en cuatro pilares esenciales:<\/p>\n

    \n
  1. Un primer pilar financiero con el Fondo 101 de la Fundaci\u00f3n Rey Balduino,<\/li>\n
  2. Un segundo pilar log\u00edstico y operativo con la creaci\u00f3n del biobanco de la Fundaci\u00f3n 101 Genomas,<\/li>\n
  3. Un tercer pilar bioinform\u00e1tico basado en la Nube Gen\u00f3mica de la Fundaci\u00f3n 101 Genomas y, por \u00faltimo,<\/li>\n
  4. Un cuarto pilar dedicado a la gesti\u00f3n \u00f3ptima del consentimiento din\u00e1mico de los participantes en la investigaci\u00f3n.<\/li>\n<\/ol>\n

    Durante la entrevista se habl\u00f3 de la posibilidad de transponer el modelo de 101 Genomas a otras enfermedades raras. Esto puso de relieve el potencial de este modelo para beneficiar al mayor n\u00famero posible de personas con enfermedades raras. <\/p>\n

    Romain y Ludivine aprovecharon la oportunidad para subrayar que la investigaci\u00f3n de las enfermedades raras est\u00e1 obligando a los cient\u00edficos a estudiar mecanismos biol\u00f3gicos que nos afectan a todos, mucho m\u00e1s all\u00e1 de los casos concretos de las personas que padecen enfermedades raras. Esta investigaci\u00f3n est\u00e1 haciendo avanzar nuestra comprensi\u00f3n del genoma humano, allanando el camino para el tratamiento de enfermedades raras, as\u00ed como de otras mucho menos raras. Por eso las personas con enfermedades raras tienen tanto que ofrecernos como recompensa a nuestros esfuerzos por ayudarles. <\/p>\n

    La entrevista completa est\u00e1 disponible como podcast en el siguiente enlace: https:\/\/open.spotify.com\/episode\/1LzkCnIonn2vwNB3yB9Z9v?si=z15gpoYhRiKn-F34P5Siwg<\/a> <\/p>\n

    La grabaci\u00f3n de estudio tambi\u00e9n puede verse en el siguiente enlace: https: \/\/www.facebook.com\/radiojudaica\/videos\/1278825449428311<\/a><\/p>\n

    Una vez m\u00e1s, queremos agradecer calurosamente a Olivier Sokolski y Laurent Poznantek, as\u00ed como al equipo de Radio Judaica, esta maravillosa oportunidad de compartir la visi\u00f3n y los logros de 101 Genomas. <\/p>\n","protected":false},"excerpt":{"rendered":"

    El mi\u00e9rcoles 31 de mayo de 2023, Ludivine y Romain fueron invitados  por Olivier Sokolski y Laurent Poznantek a participar …<\/p>\n","protected":false},"author":2,"featured_media":4028,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[187],"tags":[],"class_list":["post-2524","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-evento"],"acf":[],"yoast_head":"\nEntrevista "Conozca al Jefe" Radio Judaica - 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