{"id":102348,"date":"2018-05-16T19:44:54","date_gmt":"2018-05-17T00:44:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/6eme-rencontre-internationale-annuelle-des-patients-et-des-familles-de-lecd-orlando-fl\/"},"modified":"2026-05-25T10:23:17","modified_gmt":"2026-05-25T15:23:17","slug":"6eme-rencontre-internationale-annuelle-des-patients-et-des-familles-de-lecd-orlando-fl","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/6eme-rencontre-internationale-annuelle-des-patients-et-des-familles-de-lecd-orlando-fl\/","title":{"rendered":"6e rassemblement annuel des patients et des familles ECD, Orlando (Floride)"},"content":{"rendered":"

[et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb20px||0px||false|false\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb||10px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_heading title=\u00a0\u00bb@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||0px||false|false\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb _dynamic_attributes=\u00a0\u00bbtitle\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″][\/et_pb_heading][\/et_pb_column][\/et_pb_row][et_pb_row module_class=\u00a0\u00bbsingle-line-buttons \u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_button button_text=\u00a0\u00bbJulio Hajdenberg, MD\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ button_bg_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb button_border_radius=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb||fa||400″ button_icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_text=\u00a0\u00bbOrlando Health\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ button_bg_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb button_border_radius=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb||fa||900″ button_icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_text=\u00a0\u00bbOrlando, FL\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ button_bg_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb button_border_radius=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb||divi||400″ button_icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][et_pb_button button_text=\u00a0\u00bb16 novembre 2018″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ button_bg_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb button_border_radius=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb||fa||400″ button_icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/12\/All-Attendee-Group-Photo-2.jpg\u00a0\u00bb title_text=\u00a0\u00bbPhoto de groupe de tous les participants 2″ align=\u00a0\u00bbcenter\u00a0\u00bb force_fullwidth=\u00a0\u00bbon\u00a0\u00bb module_class=\u00a0\u00bbevent-image\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb border_radii=\u00a0\u00bbon|10px|10px|10px|10px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb text_font_size=\u00a0\u00bb14px\u00a0\u00bb text_line_height=\u00a0\u00bb-0.1em\u00a0\u00bb text_orientation=\u00a0\u00bbcenter\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

\n
\n

Photo de groupe de la rencontre internationale des patients et familles ECD d\u2019Orlando 2018<\/p>\n<\/div>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_row _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb10px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb width__hover_enabled=\u00a0\u00bboff|desktop\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||15px||false|false\u00a0\u00bb border_width_bottom=\u00a0\u00bb2px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#35A4BB\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

R\u00e9sum\u00e9 de la r\u00e9union des patients et des familles<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Au total, 109 patients, membres de la famille et m\u00e9decins, venus de huit pays, ont particip\u00e9 au rassemblement 2018 des patients et des familles.<\/p>\n

Les participants ont appris \u00e0 conna\u00eetre le processus d’essai des m\u00e9dicaments, \u00e0 g\u00e9rer la prise de plusieurs m\u00e9dicaments, \u00e0 prendre soin de soi en mangeant bien et en faisant de l’exercice, ainsi qu’\u00e0 mieux conna\u00eetre la gestion des soins. Veuillez consulter les documents relatifs \u00e0 l’\u00e9v\u00e9nement ci-dessous pour en savoir plus sur cet \u00e9v\u00e9nement r\u00e9ussi. Merci \u00e0 tous les participants ! <\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||15px||false|false\u00a0\u00bb border_width_bottom=\u00a0\u00bb2px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#35A4BB\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Photographies<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb20px||20px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Photos de la r\u00e9ception<\/h3>\n

Les photos suivantes ont \u00e9t\u00e9 prises lors de la r\u00e9ception ECD Patient & Family Gathering avec des professionnels de la sant\u00e9 et des familles ECD le 15 novembre 2018 au centre m\u00e9dical r\u00e9gional d’Orlando Health. Merci \u00e0 tous les participants pour leur pr\u00e9sence et leur engagement aupr\u00e8s de la communaut\u00e9. Vous pouvez trouver plus de photos sur Facebook sous le tag recherches #ECDGA18 ou directement sur notre page FacebookECDGA <\/a>. <\/p>\n

[\/et_pb_text][et_pb_gallery gallery_ids=\u00a0\u00bb35539,35551,35563,35575,35587,35599,35611,35623,35635,35647,35659,35671,35683,35695,35707,35719,35731,35743,35755,35767,35779,35791,35803,35815,35827,35839,35851,35863,35875,35887,35899,35911,35923,35935,35947,35959,35971″ posts_number=\u00a0\u00bb100″ orientation=\u00a0\u00bbportrait\u00a0\u00bb show_title_and_caption=\u00a0\u00bboff\u00a0\u00bb module_class=\u00a0\u00bbevent-gallery\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb db_images_per_row=\u00a0\u00bb5″ db_image_max_width=\u00a0\u00bb95%\u00a0\u00bb db_image_max_height=\u00a0\u00bb88px\u00a0\u00bb db_image_row_spacing=\u00a0\u00bb1%\u00a0\u00bb dbdb_version=\u00a0\u00bb5.1.1″ db_image_object_fit=\u00a0\u00bbcover\u00a0\u00bb border_radii_image=\u00a0\u00bbon|8px|8px|8px|8px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_gallery][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb20px||20px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Photos de la r\u00e9union des patients<\/h3>\n

Les photos suivantes ont \u00e9t\u00e9 prises lors de la r\u00e9union ECD Patient & Family Gathering le 16 novembre 2018 au Orlando Health – Orlando Regional Medical Center. Merci \u00e0 tous les participants d’avoir particip\u00e9 pendant la r\u00e9union et les temps sociaux, permettant un grand soutien et des connexions au sein de cette communaut\u00e9. Vous pouvez trouver plus de photos sur Facebook sous le tag recherches #ECDGA18 ou directement sur notre page FacebookECDGA <\/a>. Rejoignez-nous \u00e0 nouveau le 12 juillet 2019 \u00e0 Milan, en Italie ! <\/p>\n

[\/et_pb_text][et_pb_gallery gallery_ids=\u00a0\u00bb35983,35995,36007,36019,36031,36043,36055,36067,36079,36091,36103,36115,36127,36139,36151,36163,36175,36187,36199,36211,36223,36235,36247,36259,36271,36283,36295,36307,36319,36331,36343,36355,36367,36379,36391,36403,36415,36427,36439,36451,36463,36475,36487,36499,36511,36523,36535,36547,36559,36571,36583,36595,36607,36619,36631,36643,36655,36667,36679,36691,36703,36715,36727,36739,36751,36763,36775,36787,36799,36811,36823,36835,36847,36859,36871,36883,36895,36907,36919,36931,36943,36955,36967,36979,36991,37003,37015,37027,37039,37051,37063,37075,37087,37099,37111,37123,37135,37147,37159,37171,37183,37195,37207,37219,37231,37243,37255,37267,37279,37291,37303,37315,37327,37339,37351,37363,37375,37387,37399,37411,37423,37435,37447,37459,37471,37483,37495,37507,37519,37531″ posts_number=\u00a0\u00bb100″ orientation=\u00a0\u00bbportrait\u00a0\u00bb show_title_and_caption=\u00a0\u00bboff\u00a0\u00bb module_class=\u00a0\u00bbevent-gallery\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb db_images_per_row=\u00a0\u00bb5″ db_image_max_width=\u00a0\u00bb95%\u00a0\u00bb db_image_max_height=\u00a0\u00bb88px\u00a0\u00bb db_image_row_spacing=\u00a0\u00bb1%\u00a0\u00bb dbdb_version=\u00a0\u00bb5.1.1″ db_image_object_fit=\u00a0\u00bbcover\u00a0\u00bb border_radii_image=\u00a0\u00bbon|8px|8px|8px|8px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_gallery][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Photo de groupe de la rencontre internationale des patients et familles ECD d\u2019Orlando 2018 R\u00e9sum\u00e9 de la r\u00e9union des patients et des famillesAu total, 109 patients, membres de la famille […]<\/p>\n","protected":false},"author":20,"featured_media":77366,"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":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4853],"tags":[],"class_list":["post-102348","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rassemblement-des-patients-et-des-familles"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102348","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=102348"}],"version-history":[{"count":22,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102348\/revisions"}],"predecessor-version":[{"id":133591,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102348\/revisions\/133591"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/77366"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=102348"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=102348"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=102348"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}