Paris Internationales ECD-Patienten- & Familientreffen \u2013 Gruppenfoto 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
Zusammenfassung des Patienten- und Familientreffens<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]Das Patienten- und Familientreffen (PFG) 2016 brachte 63 Patienten und Familienmitglieder aus 17 L\u00e4ndern zusammen. Zur Patienten- und Familien-Community gesellten sich 64 Kliniker und Wissenschaftler, die sich leidenschaftlich f\u00fcr die Betreuung von Patienten und die Erforschung der Erdheim-Chester-Erkrankung einsetzen. Vierzehn Kliniker\/Wissenschaftler hielten Vortr\u00e4ge \u00fcber ECD und den Unterst\u00fctzungsbedarf bei ECD. Ein gemeinsames festliches Abendessen mit allen Teilnehmern bot Zeit f\u00fcr den Austausch und die W\u00fcrdigung f\u00fchrender Mitglieder der Gemeinschaft, die ihre Zeit und Ressourcen widmen, um die ECD-Community zu unterst\u00fctzen. Weitere Informationen zu den Aktivit\u00e4ten und Pr\u00e4sentationen des PFG sowie Bilder der Konferenz finden Sie unten.[\/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=”10px||20px||false|false” locked=”off” 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” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}”]<\/p>\n
Programme mit der Agenda des Treffens<\/h2>\n
[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_3,1_3,1_3″ 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” locked=”off” global_colors_info=”{}”][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2016_PFG_Program_Cover.jpeg” title_text=”2016_PFG_Programm_Cover” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2016_PFG-Program-with-Cover3_ESA_KB_for-posting.pdf” url_new_window=”on” _builder_version=”4.27.6″ _module_preset=”default” border_radii=”on|8px|8px|8px|8px” border_width_all=”1px” border_color_all=”#bfbfbf” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][\/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
Pr\u00e4sentation<\/h2>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]Die folgenden Pr\u00e4sentationen waren Teil der Agenda des Patienten- und Familientreffens 2016 in Paris, Frankreich. Besuchen Sie den YouTube-Kanal der ECD Global Alliance<\/a> f\u00fcr alle ver\u00f6ffentlichten ECD-bezogenen Videos<\/a>.[\/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
![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2016\/11\/2016-PFG-Group-Photo-Small.jpg\")
<\/a>Location:<\/strong> Paris, France\r\n\r\nA total of 63 patients and family members, and numerous physicians, from 17 different countries attended the 2016 Patient & Family Gathering. Attendees learned about current ECD studies and trials, how ECD can affect various organs of the body, pain management, scans, and care management. Please see the event materials below for more on this successful event.\r\n