{"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\/fr\/2023\/07\/25\/nord\/","title":{"rendered":"Le cofondateur de PRF est un leader d&#039;opinion dans le d\u00e9veloppement de m\u00e9dicaments contre les maladies rares"},"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 cofondatrice et directrice m\u00e9dicale du PRF, le Dr Leslie Gordon, a r\u00e9cemment \u00e9t\u00e9 invit\u00e9e \u00e0 contribuer \u00e0 une s\u00e9rie de vid\u00e9os \u00e9ducatives produites par la National Organization for Rare Disorders (NORD), avec son coll\u00e8gue le Dr Francis Collins, conseiller scientifique du pr\u00e9sident des \u00c9tats-Unis et ancien directeur des National Institutes of Health (NIH).<\/p>\n<p>Les deux hommes ont \u00e9t\u00e9 invit\u00e9s \u00e0 partager les enseignements tir\u00e9s de leurs exp\u00e9riences en mati\u00e8re de recherche sur la Progeria, depuis le d\u00e9veloppement du registre international du PRF en 1999. Dans les deux vid\u00e9os ci-dessous, ils partagent leurs conclusions sur la d\u00e9couverte du g\u00e8ne Progeria en 2003, en passant par le d\u00e9veloppement de la base de donn\u00e9es m\u00e9dicale et de recherche du PRF, l&#039;\u00e9tude d&#039;histoire naturelle du PRF et enfin par l&#039;approbation par la Food and Drug Administration (FDA) du lonafarnib, le tout premier traitement contre la Progeria, afin de d\u00e9montrer les voies possibles pour faire progresser la recherche sur les maladies rares pour les personnes impliqu\u00e9es dans la recherche et la d\u00e9fense des maladies rares.<\/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>Cette s\u00e9rie compl\u00e8te est tr\u00e8s instructive pour toute personne int\u00e9ress\u00e9e par le d\u00e9veloppement de m\u00e9dicaments contre les maladies rares, et les entretiens avec le Dr Gordon et le Dr Collins se trouvent dans le module sur les \u00e9tudes d&#039;histoire naturelle de cette s\u00e9rie.<\/span><\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>\u00c9coutez le cofondateur et directeur m\u00e9dical du PRF, le Dr Leslie Gordon, ainsi que son coll\u00e8gue de longue date, le Dr Francis Collins, partager leur parcours dans le d\u00e9veloppement de m\u00e9dicaments contre les maladies rares pour la s\u00e9rie \u00e9ducative 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 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