{"id":102298,"date":"2016-03-16T19:06:48","date_gmt":"2016-03-17T00:06:48","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/4a-reunion-internacional-de-pacientes-y-familiares-de-ecd-paris-francia\/"},"modified":"2026-05-25T10:07:26","modified_gmt":"2026-05-25T15:07:26","slug":"4a-reunion-internacional-de-pacientes-y-familiares-de-ecd-paris-francia","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/4a-reunion-internacional-de-pacientes-y-familiares-de-ecd-paris-francia\/","title":{"rendered":"4\u00aa Reuni\u00f3n Anual de Pacientes y Familiares de ECD Par\u00eds, Francia"},"content":{"rendered":"

[et_pb_section fb_built=\u00bb1″ disabled_on=\u00bboff|off|off\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb20px||0px||false|false\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb||10px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_heading title=\u00bb@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||0px||false|false\u00bb custom_padding=\u00bb||0px||false|false\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb _dynamic_attributes=\u00bbtitle\u00bb sticky_enabled=\u00bb0″][\/et_pb_heading][\/et_pb_column][\/et_pb_row][et_pb_row module_class=\u00bbsingle-line-buttons \u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_button button_text=\u00bbJulien Haroche, MD, PhD\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||fa||400″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_text=\u00bbH\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||fa||900″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_text=\u00bbPar\u00eds, Francia\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||divi||400″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][et_pb_button button_text=\u00bb16 de septiembre de 2016″ _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb16px\u00bb button_text_color=\u00bb#000000″ button_bg_color=\u00bbRGBA(255,255,255,0)\u00bb button_border_radius=\u00bb0px\u00bb button_icon=\u00bb||fa||400″ button_icon_color=\u00bb#35A4BB\u00bb button_icon_placement=\u00bbleft\u00bb button_on_hover=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb0px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/11\/2016-PFG-Group-Photo-Small.jpg\u00bb title_text=\u00bb2016-pfg-group-photo-small\u00bb align=\u00bbcenter\u00bb force_fullwidth=\u00bbon\u00bb module_class=\u00bbevent-image\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb border_radii=\u00bbon|10px|10px|10px|10px\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb text_font_size=\u00bb14px\u00bb text_line_height=\u00bb-0.1em\u00bb text_orientation=\u00bbcenter\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

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Foto de grupo del Encuentro Internacional de Pacientes y Familias de ECD en Par\u00eds 2016<\/p>\n<\/div>\n<\/div>\n

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

Resumen del Encuentro de Pacientes y Familias<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Un total de 63 pacientes y familiares, y numerosos m\u00e9dicos, de 17 pa\u00edses distintos asistieron a la Reuni\u00f3n de Pacientes y Familiares 2016. Los asistentes se informaron sobre los estudios y ensayos actuales de ECD, c\u00f3mo ECD puede afectar a diversos \u00f3rganos del cuerpo, el tratamiento del dolor, las exploraciones y la gesti\u00f3n de los cuidados. Para m\u00e1s informaci\u00f3n sobre este exitoso evento, consulta el material del evento que figura a continuaci\u00f3n.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||15px||false|false\u00bb border_width_bottom=\u00bb2px\u00bb border_color_bottom=\u00bb#35A4BB\u00bb global_colors_info=\u00bb{}\u00bb]<\/p>\n

Presentaci\u00f3n<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Las siguientes presentaciones se incluyeron en el programa del Encuentro de Pacientes y Familias de 2016 en Par\u00eds, Francia. Visite el canal de YouTube de la ECD Global Alliance<\/a> para ver todos los v\u00eddeos<\/a> publicados relacionados con la ECD.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb width=\u00bb65%\u00bb width_tablet=\u00bb80%\u00bb width_phone=\u00bb80%\u00bb width_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.27.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text module_class=\u00bbevent-table\u00bb _builder_version=\u00bb4.27.6″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\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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Fotograf\u00edas<\/h2>\n

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Foto de grupo del Encuentro Internacional de Pacientes y Familias de ECD en Par\u00eds 2016 Resumen del Encuentro de Pacientes y FamiliasUn total de 63 pacientes y familiares, y numerosos […]<\/p>\n","protected":false},"author":20,"featured_media":77287,"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":[4860],"tags":[],"class_list":["post-102298","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-reunion-de-pacientes-y-familiares"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102298","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=102298"}],"version-history":[{"count":28,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102298\/revisions"}],"predecessor-version":[{"id":133153,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/102298\/revisions\/133153"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/77287"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=102298"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=102298"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=102298"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}