{"id":9181,"date":"2019-12-24T19:32:53","date_gmt":"2019-12-24T19:32:53","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?page_id=9181"},"modified":"2024-04-22T09:35:55","modified_gmt":"2024-04-22T13:35:55","slug":"international-registry-2","status":"publish","type":"page","link":"https:\/\/www.progeriaresearch.org\/fr\/international-registry-2\/","title":{"rendered":"Programme de registre international"},"content":{"rendered":"

[et_pb_section fb_built=\u201d1\u2033 fullwidth=\u201don\u201d disabled_on=\u201doff|off|off\u201d _builder_version=\u201d4.16\u2033 border_width_bottom=\u201d55px\u201d border_color_bottom=\u201d#29327a\u201d locked=\u201doff\u201d collapsed=\u201don\u201d global_colors_info=\u201d{}\u201d][et_pb_fullwidth_header _builder_version=\u201d4.24.0\u2033 title_font=\u201d||||||||\u201d title_font_size=\u201d55\u2033 background_color=\u201d#29327a\u201d background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2020\/12\/Prachi.jpg\u201d background_position=\u201dcenter_left\u201d custom_padding=\u201d9vw||9vw||true\u201d custom_padding_tablet=\u201d\u201d custom_padding_phone=\u201d|56px||\u201d custom_padding_last_edited=\u201don|desktop\u201d title_font_size_tablet=\u201d45px\u201d title_font_size_phone=\u201d40px\u201d title_font_size_last_edited=\u201don|phone\u201d z_index_tablet=\u201d500\u2033 custom_css_main_element=\u201dbackground-position: center 18% !important;\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

Le PRF <\/span><\/span><\/h1>\n

International <\/span><\/span><\/h1>\n

Patiente atteinte de prog\u00e9ria <\/span><\/span><\/h1>\n

Enregistrement<\/span><\/span><\/span><\/h1>\n

<\/span><\/span><\/p>\n

 <\/p>\n

[\/et_pb_fullwidth_header][\/et_pb_section][et_pb_section fb_built=\u201d1\u2033 use_custom_gutter=\u201don\u201d gutter_width=\u201d1\u2033 specialty=\u201don\u201d padding_left_1=\u201d35px\u201d padding_left_2=\u201d35px\u201d padding_2_tablet=\u201d|||0px\u201d padding_2_phone=\u201d|||0px\u201d padding_2_last_edited=\u201don|desktop\u201d module_class_1=\u201dsidebar-secondary-nav\u201d module_class=\u201dempreinte-de-la-main-bg\u201d _builder_version=\u201d4.16\u2033 background_image=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2019\/04\/empreinte-de-la-main-bleue-uniquement.png\u201d parallax=\u201don\u201d parallax_method=\u201doff\u201d inner_width=\u201d100%\u201d inner_max_width=\u201d100%\u201d custom_padding=\u201d0|0px|54px|0px|false|false\u201d z_index_tablet=\u201d500\u2033 border_width_top=\u201d10px\u201d border_color_top=\u201d#8fd2ed\u201d use_custom_width=\u201don\u201d width_unit=\u201doff\u201d custom_width_percent=\u201d100%\u201d global_colors_info=\u201d{}\u201d][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_sidebar area=\u201det_pb_widget_area_1\u2033 disabled_on=\u201don|on|off\u201d admin_label=\u201dBarre lat\u00e9rale scientifique\u201d module_class=\u201dsubpage-sidebars\u201d _builder_version=\u201d4.16\u2033 animation_style=\u201dfade\u201d z_index_tablet=\u201d500\u2033 header_text_shadow_horizontal_length_tablet=\u201d0px\u201d header_text_shadow_vertical_length_tablet=\u201d0px\u201d header_text_shadow_blur_strength_tablet=\u201d1px\u201d body_text_shadow_horizontal_length_tablet=\u201d0px\u201d body_text_shadow_vertical_length_tablet=\u201d0px\u201d body_text_shadow_blur_strength_tablet=\u201d1px\u201d border_width_right=\u201d5px\u201d border_width_right_tablet=\u201d5px\u201d border_width_right_phone=\u201d5px\u201d box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d text_shadow_horizontal_length_tablet=\u201d0px\u201d text_shadow_vertical_length_tablet=\u201d0px\u201d text_shadow_blur_strength_tablet=\u201d1px\u201d locked=\u201dd\u00e9sactiv\u00e9\u201d global_colors_info=\u201d{}\u201d]
\n[\/et_pb_sidebar][\/et_pb_column][et_pb_column type=\u201d3_4\u2033 specialty_columns=\u201d3\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_row_inner custom_padding_last_edited=\u201don|phone\u201d disabled_on=\u201don|on|\u201d _builder_version=\u201d4.16\u2033 custom_padding=\u201d39.4375px|35px|0px||false|false\u201d custom_padding_tablet=\u201d|35px||35px||true\u201d custom_padding_phone=\u201d\u201d animation_direction=\u201dtop\u201d z_index_tablet=\u201d500\u2033 global_colors_info=\u201d{}\u201d][et_pb_column_inner saved_specialty_column_type=\u201d3_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_text admin_label=\u201dPAGE D\u2019INTRODUCTION DES PROGRAMMES DE RECHERCHE\u201d _builder_version=\u201d4.24.3\u2033 background_size=\u201dinitial\u201d background_position=\u201dtop_left\u201d background_repeat=\u201dr\u00e9p\u00e9ter\u201d hover_enabled=\u201d0\u2033 z_index_tablet=\u201d500\u2033 box_shadow_horizontal_tablet=\u201d0px\u201d box_shadow_vertical_tablet=\u201d0px\u201d box_shadow_blur_tablet=\u201d40px\u201d box_shadow_spread_tablet=\u201d0px\u201d global_colors_info=\u201d{}\u201d sticky_enabled=\u201d0\u2033]<\/p>\n

La Progeria Research Foundation est la ressource mondiale pour la recherche et l'\u00e9ducation sur la prog\u00e9ria. La prog\u00e9ria est une maladie extr\u00eamement rare. Afin de mieux comprendre la pathologie et l'\u00e9volution naturelle du syndrome, nous avons mis en place un programme de registre international.<\/p>\n

Le Registre fournit des ressources pour l\u2019\u00e9tude de la Prog\u00e9ria et maintient une base de donn\u00e9es centralis\u00e9e sur les enfants atteints de Prog\u00e9ria du monde entier, tout en servant \u00e0 am\u00e9liorer la communication des id\u00e9es entre les chercheurs, afin d\u2019assurer une distribution rapide de toute nouvelle information pouvant b\u00e9n\u00e9ficier aux patients et \u00e0 leurs familles.<\/p>\n

Le registre peut \u00eatre audit\u00e9 par des agences gouvernementales, telles que la Food and Drug Administration des \u00c9tats-Unis, dans des situations telles que le d\u00e9veloppement de m\u00e9dicaments.<\/p>\n

Votre coop\u00e9ration pour l'inscription et pour contribuer \u00e0 la contribution des informations sur les enfants atteints de prog\u00e9ria au registre est grandement appr\u00e9ci\u00e9e. Si vous \u00eates le parent, le m\u00e9decin ou un autre repr\u00e9sentant d'un enfant atteint de prog\u00e9ria, veuillez remplir un formulaire de registre et le soumettre \u00e0\u00a0<\/span>info@progeriaresearch.org<\/a>.<\/strong><\/p>\n

Merci d'avance de participer \u00e0 Registre international des patients atteints de prog\u00e9ria du PRF<\/span>.<\/p>\n

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global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/www.progeriaresearch.org\/newsletter-signup\/\u201d button_text=\u201dInscrivez-vous maintenant\u201d admin_label=\u201dInscrivez-vous \u00e0 la newsletter\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.16\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201dactiv\u00e9|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201dactiv\u00e9\u201d button_bg_color__hover=\u201d#8fd2ed\u201d button_border_color__hover_enabled=\u201dactiv\u00e9\u201d]<\/p>\n

S'inscrire<\/h2>\n

pour notre<\/h2>\n

Bulletin!<\/h2>\n

[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_cta button_url=\u201dhttps:\/\/progeriaresearch.donorsupport.co\/-\/XZHJVWZR\u201d button_text=\u201dFaites un don maintenant\u201d admin_label=\u201dEnsemble, nous trouverons le rem\u00e8de !\u201d module_class=\u201dsign-btn\u201d _builder_version=\u201d4.16\u2033 header_font_size=\u201d25px\u201d background_color=\u201d#29327a\u201d animation_style=\u201dslide\u201d animation_direction=\u201dleft\u201d animation_intensity_slide=\u201d25%\u201d header_font_size_tablet=\u201d\u201d header_font_size_phone=\u201d30px\u201d header_font_size_last_edited=\u201don|desktop\u201d body_font_size_tablet=\u201d\u201d body_font_size_phone=\u201d\u201d body_font_size_last_edited=\u201don|desktop\u201d z_index_tablet=\u201d500\u2033 border_radii=\u201don|25px|25px|25px|25px\u201d global_colors_info=\u201d{}\u201d button_bg_color__hover_enabled=\u201don\u201d bouton_bg_color__hover=\u201d#8fd2ed\u201d bouton_border_color__hover_enabled=\u201don\u201d]<\/p>\n

Ensemble, nous<\/h2>\n

VOLONT\u00c9<\/em><\/h2>\n

trouve le rem\u00e8de !<\/h2>\n

[\/et_pb_cta][\/et_pb_column][et_pb_column type=\u201d1_2\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2024\/02\/2024-strip-footer-strip-.png\u201d title_text=\u201dBande de pied de page de bande 2024\u201d _builder_version=\u201d4.24.0\u2033 _module_preset=\u201ddefault\u201d custom_margin=\u201d35px||||false|false\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"

Registre international des patients atteints de prog\u00e9ria La Fondation de recherche sur la prog\u00e9ria est la ressource mondiale pour la recherche et l\u2019\u00e9ducation sur la prog\u00e9ria. La prog\u00e9ria est une maladie ultra-rare. Afin de mieux comprendre la pathologie et l\u2019\u00e9volution naturelle du syndrome, nous avons mis en place un programme de registre international. Le registre fournit des ressources pour l\u2019\u00e9tude de la prog\u00e9ria et maintient [\u2026]<\/p>","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-9181","page","type-page","status-publish","hentry"],"yoast_head":"\nInternational registry | The Progeria Research Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.progeriaresearch.org\/fr\/international-registry-2\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"International registry | The Progeria Research Foundation\" \/>\n<meta property=\"og:description\" content=\"The PRF International Progeria Patient Registry   The Progeria Research Foundation is the global resource for Progeria research and education. Progeria is an ultra-rare condition. In order to better understand the pathology and natural course of the syndrome, we established an International Registry Program. 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