{"id":102286,"date":"2016-03-16T19:06:48","date_gmt":"2016-03-17T00:06:48","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=102286"},"modified":"2026-07-23T07:26:22","modified_gmt":"2026-07-23T12:26:22","slug":"4o-encontro-anual-de-pacientes-e-familiares-com-ecd-em-paris-franca","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/pt\/4th-annual-ecd-patient-family-gathering-paris-france\/","title":{"rendered":"4\u00ba Encontro Anual de Pacientes e Familiares com ECD, em Paris, Fran\u00e7a"},"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=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_heading title=”@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@” _builder_version=”4.27.6″ _dynamic_attributes=”title” _module_preset=”default” custom_margin=”||0px||false|false” custom_padding=”||0px||false|false” global_colors_info=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][\/et_pb_button][et_pb_button button_text=”Paris, France” _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=”{}” theme_builder_area=”post_content”][\/et_pb_button][et_pb_button button_text=”September 16, 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=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/07\/4th-pfg-1.png” title_text=”4th pfg” align=”center” force_fullwidth=”on” module_class=”past-event-image” _builder_version=”4.27.7″ _module_preset=”default” custom_margin=”||10px||false|false” hover_enabled=”0″ border_radii=”on|10px|10px|10px|10px” global_colors_info=”{}” theme_builder_area=”post_content” sticky_enabled=”0″][\/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=”{}” theme_builder_area=”post_content”]<\/p>\n

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Paris International ECD Patient & Family Gathering Group Picture 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=”{}” theme_builder_area=”post_content”][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” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”]<\/p>\n

Patient & Family Gathering Summary<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]The 2016 Patient & Family Gathering (PFG) brought together 63 patients and family members from 17 countries. The patient\/family community was joined by 64 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Fourteen clinicians\/scientists provided talks on ECD and ECD support needs. A Celebration Dinner with all attendees was enjoyed, allowing time for fellowship and recognition of community leaders who dedicate their time and resources to aid the ECD community. Please see the information below for more on the PFG activities and presentations, as well as pictures from the conference.[\/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” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” border_width_bottom=”2px” border_color_bottom=”#35A4BB” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

Programs with Gathering Agenda<\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2016_PFG_Program_Cover.jpeg” title_text=”2016_PFG_Program_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=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_column][et_pb_column type=”1_3″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”]<\/p>\n

Presentation<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]The following presentations were included in the 2016 Patient & Family Gathering agenda in Paris, France. Visit the ECD Global Alliance YouTube channel<\/a> for all published ECD related 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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][et_pb_text module_class=”event-table” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]<\/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

[\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”4_4″ _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”][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=”{}” theme_builder_area=”post_content”]<\/p>\n

Photographs<\/h2>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”39542,39554,39566,39578,39590,39602,39614,39626,39638,39650,39662,39674,39686,39698,39710,39722,39734,39746,39758,39770,39782,39794,39806,39818,39830,39842,39854,39866,39878,39890,39902,39914,39926,39938,39950,39962,39974,39986,39998″ posts_number=”100″ orientation=”portrait” show_title_and_caption=”off” module_class=”event-gallery” _builder_version=”4.27.6″ _module_preset=”default” db_images_per_row=”5″ db_image_max_width=”95%” db_image_max_height=”88px” db_image_row_spacing=”1%” dbdb_version=”5.6″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” global_colors_info=”{}” theme_builder_area=”post_content”][\/et_pb_gallery][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Paris International ECD Patient & Family Gathering Group Picture 2016 Patient & Family Gathering SummaryThe 2016 Patient & Family Gathering (PFG) brought together 63 patients and family members from 17 […]<\/p>\n","protected":false},"author":20,"featured_media":172594,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"\"<\/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

2016 Event Materials<\/h4>\r\nPresentations<\/strong>\r\n\r\nThe following presentations were included in the 2016 Patient & Family Gathering agenda in Paris, France. Visit the ECD Global Alliance YouTube channel<\/a> for all published ECD related videos.\r\n\r\n[table id=34 \/]\r\n\r\nPhotos<\/strong>\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"39542,39554,39566,39578,39590,39602,39614,39626,39638,39650,39662,39674,39686,39698,39710,39722,39734,39746,39758,39770,39782,39794,39806,39818,39830,39842,39854,39866,39878,39890,39902,39914,39926,39938,39950,39962,39974,39986,39998\"]\r\n

2015 Event Materials<\/h4>\r\nPresentations<\/strong>\r\n\r\nPlease see the following presentations from the 2015 Patient Gathering in Houston, TX.\r\n\r\n[table id=35 \/]\r\n\r\nPhotos\r\n\r\n[gallery columns=\"4\" size=\"full\" ids=\"40037,40049,40061,40073,40085,40097,40109,40121,40133,40145,40157,40169,40181,40193,40205,40217,40229,40241,40253,40265,40277,40289,40301,40313,40325,40337,40349,40361,40373,40385,40397,40409,40421,40433,40445,40457,40469,40481,40493,40505,40517,40529,40541,40553,40565,40577,40589,40601,40613,40625,40637,40649,40661,40673,40685,40697,40709,40721,40733,40745,40757,40769,40781,40793,40805,40817,40829,40841,40853,40865,40877,40889,40901,40913,40925,40937,40949,40961,40973,40985,40997,41009,41021,41033,41045,41057,41069,41081,41093,41105,41117,41129,41141,41153,41165,41177,41189,41201,41213,41225,41237,41249,41261,41273,41285,41297,41309,41321,41333,41345,41357,41369,41381,41393,41405,41417,41429,41441,41453,41465,41477,41489,41501\"]","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4816],"tags":[],"class_list":["post-102286","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-and-family-gathering"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/102286","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/comments?post=102286"}],"version-history":[{"count":4,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/102286\/revisions"}],"predecessor-version":[{"id":174250,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/posts\/102286\/revisions\/174250"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media\/172594"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/media?parent=102286"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/categories?post=102286"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt\/wp-json\/wp\/v2\/tags?post=102286"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}