{"id":102291,"date":"2016-03-16T19:06:48","date_gmt":"2016-03-17T00:06:48","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/4e-reunion-internationale-des-patients-et-des-familles-de-lecd-paris-france\/"},"modified":"2026-05-25T10:07:40","modified_gmt":"2026-05-25T15:07:40","slug":"4e-reunion-internationale-des-patients-et-des-familles-de-lecd-paris-france","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/4e-reunion-internationale-des-patients-et-des-familles-de-lecd-paris-france\/","title":{"rendered":"4e r\u00e9union annuelle des patients et des familles de l\u2019ECD Paris, France"},"content":{"rendered":"

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global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_button button_text=\u00a0\u00bbJulien Haroche, MD, PhD\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\u00bbH\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re\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″ 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button_text=\u00a0\u00bb16 septembre 2016″ _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 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Photo de groupe de la rencontre internationale des patients et des familles ECD \u00e0 Paris 2016<\/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″ disabled_on=\u00a0\u00bboff|off|off\u00a0\u00bb _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]Au total, 63 patients et membres de leur famille, ainsi que de nombreux m\u00e9decins, venus de 17 pays diff\u00e9rents, ont particip\u00e9 \u00e0 l \u00ab \u00e9dition 2016 de la r\u00e9union des patients et des familles. Les participants ont \u00e9t\u00e9 inform\u00e9s des \u00e9tudes et essais en cours sur le site ECD, de la mani\u00e8re dont ECD peut affecter les diff\u00e9rents organes du corps, de la gestion de la douleur, des scanners et de la gestion des soins. Veuillez consulter les documents relatifs \u00e0 l \u00bb \u00e9v\u00e9nement ci-dessous pour en savoir plus sur cet \u00e9v\u00e9nement r\u00e9ussi.[\/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\u00bb0px||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _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

Pr\u00e9sentation<\/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]Les pr\u00e9sentations suivantes figuraient \u00e0 l\u2019ordre du jour de la r\u00e9union des patients et des familles 2016 \u00e0 Paris, en France. Consultez la cha\u00eene YouTube de l\u2019ECD Global Alliance<\/a> pour visionner toutes les vid\u00e9os<\/a> publi\u00e9es relatives \u00e0 l\u2019ECD.[\/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 module_class=\u00a0\u00bbevent-table\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n\n\n\n\n\t\n\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t\n\t
Presenter<\/th>Presentation Slides<\/th>Presentation Video<\/th>\n<\/tr>\n<\/thead>\n
St\u00e9phane Barete, MD<\/td>ECD Skin Issues<\/a><\/td>ECD Skin Issues<\/a><\/td>\n<\/tr>\n
Giulio Cavalli, MD<\/td>ECD Lung & Heart Issues<\/a><\/td>ECD Lung & Heart Issues<\/a><\/td>\n<\/tr>\n
Carine Courtillot, MD<\/td>Endocrinological Consequences of ECD<\/a><\/td>Endocrinological Consequences of ECD<\/a><\/td>\n<\/tr>\n
Eli Diamond, MD
\n(Presented by Juvianee Estrada-Veras, MD)<\/td>		ECD Neurological Issues<\/a><\/td>ECD Neurological Issues<\/a><\/td>\n<\/tr>\n
Benjamin Durham, MD<\/td>ECD Studies at MSKCC<\/a><\/td>See ECD Studies & Trials Panel<\/td>\n<\/tr>\n
Philippe A. Grenier, MD<\/td>CT of Thoracoabdominal Involvement in Erdheim-Chester Disease<\/a><\/td>See ECD Scan and Radiology Panel.<\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>Importance of Clinical Trials<\/a><\/td>See ECD Studies & Trials Panel<\/td>\n<\/tr>\n
Kenneth L. McClain, MD, PhD<\/td>ECD Studies & Trials \u2013 Texas Children\u2019s Cancer Center<\/a><\/td>See ECD Studies & Trials Panel<\/td>\n<\/tr>\n
Augusto Vaglio, MD, PhD<\/td>Renal & Ureteral Involvement in ECD<\/a><\/td>Renal & Ureteral Involvement in ECD<\/a><\/td>\n<\/tr>\n
Panel participants:Achille Aouba, MD, PhD, Lorenzo Dagna, MD, Juvianee Estrada-Veras, MD,
\nJulien Haroche, MD, PhD, Filip Janku, MD, PhD,
\nKenneth McClain, MD PhD, Augusto Vaglio, MD, PhD<\/td>		ECD Studies & Trials Panel<\/td>ECD Studies & Trials Panel<\/a><\/td>\n<\/tr>\n
Panel participants:Marcus Chen, MD, Phillippe Cluzel, MD PhD,
\nPhillippe Grenier, MD, Phillippe Maksund, MD<\/td>		ECD Scan and Radiology Panel<\/td>ECD Scan and Radiology Panel<\/a><\/td>\n<\/tr>\n
Physician panelists answer patient questions regarding Erdheim-Chester Disease.<\/td>Doctor Question & Answer Panel<\/td>Doctor Question & Answer Panel<\/a><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n\n

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Photographies<\/h2>\n

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Photo de groupe de la rencontre internationale des patients et des familles ECD \u00e0 Paris 2016 R\u00e9sum\u00e9 de la r\u00e9union des patients et des famillesAu total, 63 patients et membres […]<\/p>\n","protected":false},"author":20,"featured_media":77279,"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-102291","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\/102291","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=102291"}],"version-history":[{"count":36,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102291\/revisions"}],"predecessor-version":[{"id":133176,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102291\/revisions\/133176"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/77279"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=102291"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=102291"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=102291"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}