{"id":17197,"date":"2023-07-25T09:44:36","date_gmt":"2023-07-25T13:44:36","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?p=17197"},"modified":"2025-02-15T17:45:18","modified_gmt":"2025-02-15T22:45:18","slug":"nord","status":"publish","type":"post","link":"https:\/\/www.progeriaresearch.org\/es\/2023\/07\/25\/nord\/","title":{"rendered":"El cofundador de PRF act\u00faa como l\u00edder de opini\u00f3n en el desarrollo de f\u00e1rmacos para enfermedades raras"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;0px||0px|||&#8221; locked=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.16&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2023\/07\/Lesliewcomputer.png&#8221; title_text=&#8221;Lesliewcomputer&#8221; _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; custom_margin=&#8221;||-77px|||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; min_height=&#8221;414.9px&#8221; custom_margin=&#8221;-88px|auto|-173px|auto||&#8221; custom_padding=&#8221;||45px|||&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.17.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_text _builder_version=&#8221;4.21.0&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>La cofundadora y directora m\u00e9dica de PRF, la Dra. Leslie Gordon, fue invitada recientemente a contribuir a una serie de videos educativos producidos por la Organizaci\u00f3n Nacional de Enfermedades Raras (NORD), junto con su colega, el Dr. Francis Collins, asesor cient\u00edfico del Presidente de los EE. UU. y ex director de los Institutos Nacionales de Salud (NIH).<\/p>\n<p>A ambos se les pidi\u00f3 que compartieran los aprendizajes de sus experiencias en la investigaci\u00f3n de la progeria, comenzando desde el desarrollo del Registro Internacional de PRF en 1999. En los dos videos a continuaci\u00f3n, comparten las conclusiones sobre el hallazgo del gen de la progeria en 2003, a trav\u00e9s del desarrollo de la base de datos m\u00e9dica y de investigaci\u00f3n de PRF, el estudio de historia natural de PRF y, finalmente, a trav\u00e9s de la aprobaci\u00f3n de la Administraci\u00f3n de Alimentos y Medicamentos (FDA) de lonafarnib, el primer tratamiento para la progeria, para demostrar posibles v\u00edas para avanzar en la investigaci\u00f3n sobre enfermedades raras para aquellos involucrados en la investigaci\u00f3n y la defensa de las enfermedades raras.<\/p>\n<p>[\/et_pb_text][et_pb_button button_url=&#8221;https:\/\/learn.rarediseases.org\/courses\/rare-disease-drug-development-series\/&#8221; url_new_window=&#8221;on&#8221; button_text=&#8221;These videos can be accessed HERE for free in NORD\u2019s Rare Disease Drug Development Series.&#8221; admin_label=&#8221;NORD Dr. Leslie Gordon &#038; Dr. Francis Collins&#8221; _builder_version=&#8221;4.22.1&#8243; _module_preset=&#8221;default&#8221; button_text_color=&#8221;#FFFFFF&#8221; button_bg_color=&#8221;#29327A&#8221; button_border_color=&#8221;#8FD2ED&#8221; background_layout=&#8221;dark&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_button][et_pb_text _builder_version=&#8221;4.22.1&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p><span>Esta serie completa es sumamente informativa para cualquier persona interesada en el desarrollo de f\u00e1rmacos para enfermedades raras, y las entrevistas con el Dr. Gordon y el Dr. Collins se encuentran dentro del m\u00f3dulo sobre Estudios de Historia Natural dentro de esta serie.<\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>Escuche al cofundador y director m\u00e9dico de PRF, el Dr. Leslie Gordon, junto con su colega de muchos a\u00f1os, el Dr. Francis Collins, compartir su trayectoria en el desarrollo de medicamentos para enfermedades raras para la serie educativa NORD. <\/p>","protected":false},"author":2,"featured_media":17213,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[2,1],"tags":[],"class_list":["post-17197","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-uncategorized"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>nord | The Progeria Research Foundation<\/title>\n<meta name=\"description\" content=\"Hear PRF co-founder and Medical Director, Dr. Leslie Gordon, along with long-time colleague Dr. Francis Collins, share their journey in rare disease drug development for NORD educational series.\" 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