{"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":"2026-06-18T11:15:01","modified_gmt":"2026-06-18T16:15:01","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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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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 hover_enabled=\u00a0\u00bb0″ global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″]La r\u00e9union des patients et des familles (PFG) de 2016 a rassembl\u00e9 63 patients et membres de leur famille venus de 17 pays. La communaut\u00e9 des patients et des familles a \u00e9t\u00e9 rejointe par 64 cliniciens et scientifiques passionn\u00e9s par la prise en charge des patients et l’approfondissement des connaissances sur la maladie d’Erdheim-Chester. Quatorze cliniciens\/scientifiques ont donn\u00e9 des conf\u00e9rences sur l’ECD et les besoins de soutien li\u00e9s \u00e0 l’ECD. Un d\u00eener de c\u00e9l\u00e9bration a \u00e9t\u00e9 organis\u00e9 avec tous les participants, offrant un moment de convivialit\u00e9 et de reconnaissance aux leaders de la communaut\u00e9 qui consacrent leur temps et leurs ressources \u00e0 soutenir la communaut\u00e9 ECD. Veuillez consulter les informations ci-dessous pour en savoir plus sur les activit\u00e9s et les pr\u00e9sentations du PFG, ainsi que des photos de la conf\u00e9rence.[\/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\u00bb10px||20px||false|false\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb width__hover_enabled=\u00a0\u00bboff|desktop\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb border_width_bottom=\u00a0\u00bb2px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#35A4BB\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb]<\/p>\n

Programmes avec l\u2019ordre du jour de la rencontre<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00a0\u00bb1_3,1_3,1_3″ 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 locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_column type=\u00a0\u00bb1_3″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_image src=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2016_PFG_Program_Cover.jpeg\u00a0\u00bb title_text=\u00a0\u00bb2016_PFG_Programme_Couverture\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2016_PFG-Program-with-Cover3_ESA_KB_for-posting.pdf\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb hover_enabled=\u00a0\u00bb0″ border_radii=\u00a0\u00bbon|8px|8px|8px|8px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb border_width_all=\u00a0\u00bb1px\u00a0\u00bb border_color_all=\u00a0\u00bb#bfbfbf\u00a0\u00bb sticky_enabled=\u00a0\u00bb0″][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_3″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_3″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][\/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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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 theme_builder_area=\u00a0\u00bbpost_content\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\n\t
Presenter<\/th>Presentation Slides<\/th>Presentation Video<\/th>\n<\/tr>\n<\/thead>\n
Julien Haroche, MD<\/td>N\/A<\/td>Welcome<\/a><\/td>\n<\/tr>\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 famillesLa r\u00e9union des patients et des […]<\/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":"","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":8,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102291\/revisions"}],"predecessor-version":[{"id":161368,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102291\/revisions\/161368"}],"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}]}}