{"id":102290,"date":"2016-03-16T19:06:48","date_gmt":"2016-03-17T00:06:48","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/4-raduno-internazionale-dei-pazienti-e-delle-famiglie-ecd-parigi-francia\/"},"modified":"2026-05-25T10:08:04","modified_gmt":"2026-05-25T15:08:04","slug":"4-raduno-internazionale-dei-pazienti-e-delle-famiglie-ecd-parigi-francia","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/it\/4-raduno-internazionale-dei-pazienti-e-delle-famiglie-ecd-parigi-francia\/","title":{"rendered":"4\u00b0 Raduno annuale dei pazienti e delle famiglie ECD Parigi, Francia"},"content":{"rendered":"

[et_pb_section fb_built=”1″ disabled_on=”off|off|off” _builder_version=”4.27.6″ _module_preset=”default” custom_padding=”20px||0px||false|false” locked=”off” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”||10px||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_heading title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@” _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||0px||false|false” custom_padding=”||0px||false|false” hover_enabled=”0″ global_colors_info=”{}” _dynamic_attributes=”title” sticky_enabled=”0″][\/et_pb_heading][\/et_pb_column][\/et_pb_row][et_pb_row module_class=”single-line-buttons ” _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”0px||0px||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_button button_text=”Julien Haroche, MD, PhD” _builder_version=”4.27.6″ _module_preset=”default” custom_button=”on” button_text_size=”16px” button_text_color=”#000000″ button_bg_color=”RGBA(255,255,255,0)” button_border_radius=”0px” button_icon=”||fa||400″ button_icon_color=”#35A4BB” button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_text=”H\u00f4pital Piti\u00e9-Salp\u00eatri\u00e8re” _builder_version=”4.27.6″ _module_preset=”default” custom_button=”on” button_text_size=”16px” button_text_color=”#000000″ button_bg_color=”RGBA(255,255,255,0)” button_border_radius=”0px” button_icon=”||fa||900″ button_icon_color=”#35A4BB” button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_text=”Parigi, Francia” _builder_version=”4.27.6″ _module_preset=”default” custom_button=”on” button_text_size=”16px” button_text_color=”#000000″ button_bg_color=”RGBA(255,255,255,0)” button_border_radius=”0px” button_icon=”||divi||400″ button_icon_color=”#35A4BB” button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}”][\/et_pb_button][et_pb_button button_text=”16 settembre 2016″ _builder_version=”4.27.6″ _module_preset=”default” custom_button=”on” button_text_size=”16px” button_text_color=”#000000″ button_bg_color=”RGBA(255,255,255,0)” button_border_radius=”0px” button_icon=”||fa||400″ button_icon_color=”#35A4BB” button_icon_placement=”left” button_on_hover=”off” global_colors_info=”{}”][\/et_pb_button][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”0px||||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/11\/2016-PFG-Group-Photo-Small.jpg” title_text=”foto-gruppo-pfg-2016-piccola” align=”center” force_fullwidth=”on” module_class=”event-image” _builder_version=”4.27.6″ _module_preset=”default” border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}”][\/et_pb_image][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” text_font_size=”14px” text_line_height=”-0.1em” text_orientation=”center” global_colors_info=”{}”]<\/p>\n

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Foto di gruppo dell’Incontro internazionale per pazienti ECD e familiari a Parigi 2016<\/p>\n<\/div>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ disabled_on=”off|off|off” _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”0px||||false|false” locked=”off” global_colors_info=”{}”][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”10px||||false|false” global_colors_info=”{}” width__hover_enabled=”off|desktop”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||15px||false|false” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}”]<\/p>\n

Riepilogo dell’Incontro per Pazienti e Famiglie<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]Un totale di 63 pazienti e familiari e numerosi medici provenienti da 17 paesi diversi hanno partecipato al Patient & Family Gathering 2016. I partecipanti hanno appreso gli studi e le sperimentazioni in corso su ECD, il modo in cui ECD pu\u00f2 influenzare i vari organi del corpo, la gestione del dolore, le scansioni e la gestione dell \u201cassistenza. Per maggiori informazioni su questo evento di successo, consulta il materiale dell\u201d evento qui sotto.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”0px||0px||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”||15px||false|false” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}”]<\/p>\n

Presentazione<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]Le seguenti presentazioni sono state incluse nell’agenda dell’Incontro per Pazienti e Famiglie 2016 a Parigi, in Francia. Visita il canale YouTube della ECD Global Alliance<\/a> per tutti i video<\/a> pubblicati relativi alla ECD.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.6″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”||0px||false|false” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text module_class=”event-table” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]<\/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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Fotografie<\/h2>\n

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Foto di gruppo dell’Incontro internazionale per pazienti ECD e familiari a Parigi 2016 Riepilogo dell’Incontro per Pazienti e FamiglieUn totale di 63 pazienti e familiari e numerosi medici provenienti da […]<\/p>\n","protected":false},"author":20,"featured_media":77284,"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":[4852],"tags":[],"class_list":["post-102290","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-riunione-di-pazienti-e-familiari"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102290","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/comments?post=102290"}],"version-history":[{"count":35,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102290\/revisions"}],"predecessor-version":[{"id":133222,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102290\/revisions\/133222"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/77284"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=102290"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=102290"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=102290"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}