{"id":102363,"date":"2019-01-11T19:47:40","date_gmt":"2019-01-12T01:47:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/7e-internationale-ecd-patient-familie-bijeenkomst-milaan-italie\/"},"modified":"2026-07-03T08:54:27","modified_gmt":"2026-07-03T13:54:27","slug":"7e-internationale-ecd-patient-familie-bijeenkomst-milaan-italie","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nl\/7e-internationale-ecd-patient-familie-bijeenkomst-milaan-italie\/","title":{"rendered":"7e Jaarlijkse ECD Pati\u00ebnt & Familie bijeenkomst Milaan, Itali\u00eb"},"content":{"rendered":"

[et_pb_section fb_built=”1″ _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″ _dynamic_attributes=”title” _module_preset=”default” custom_margin=”||0px||false|false” custom_padding=”||0px||false|false” global_colors_info=”{}”][\/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=”Lorenzo Dagna, MD, FACP” _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=”IRCCS San Raffaele Scientific Institute” _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=”Milaan, Itali\u00eb” _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=”12 juli 2019″ _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\/2026\/06\/7th-Annual-ECD-Patient-Family-Gathering.jpg” title_text=”7e Internationale ECD Pati\u00ebnt & Familie bijeenkomst” align=”center” force_fullwidth=”on” module_class=”event-image” _builder_version=”4.27.7″ _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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Groepsfoto van de Milan International ECD Patient & Family Gathering 2019<\/p>\n<\/div>\n<\/div>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _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

Samenvatting pati\u00ebnten- en familiebijeenkomst<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

De Pati\u00ebnten- en familiebijeenkomst (PFG) van 2019 bracht 49 pati\u00ebnten en familieleden uit 10 landen samen. De pati\u00ebnten- en familiecommunity werd vergezeld door 38 clinici en wetenschappers die gepassioneerd zijn over de zorg voor pati\u00ebnten en het vergaren van meer kennis over Erdheim-Chester. Tien clinici\/wetenschappers gaven presentaties over ECD en de ondersteuningsbehoeften bij ECD. Er werd genoten van een feestelijk diner met alle aanwezigen, wat tijd bood voor onderling contact en erkenning van gemeenschapsleiders die hun tijd en middelen inzetten om de ECD-gemeenschap te helpen. Zie de onderstaande informatie voor meer over de PFG-activiteiten en presentaties, evenals foto’s van de conferentie. <\/p>\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=”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

Programma’s met de agenda van de bijeenkomst<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_4,1_4,1_4,1_4″ 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||false|false” locked=”off” global_colors_info=”{}”][et_pb_column type=”1_4″ _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\/Picture12.png” title_text=”Afbeelding1(2)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2019-Milan-PFG-Program.pdf” url_new_window=”on” force_fullwidth=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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\/Picture13.png” title_text=”Afbeelding1(3)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/2019-Milan-PFG-Program-1.pdf” url_new_window=”on” force_fullwidth=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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\/Picture14.png” title_text=”Afbeelding1(4)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/German-program-final.pdf” url_new_window=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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\/Picture15.png” title_text=”Afbeelding1(5)” url=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2026\/06\/Italian-Program-Final.pdf” url_new_window=”on” force_fullwidth=”on” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/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” locked=”off” 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

Presentatie<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]De volgende presentaties zijn toegevoegd in de hoop dat ze pati\u00ebnten, families en artsen zullen helpen die meer willen leren over ECD<\/a>. De ECDGA is dankbaar voor de inspanningen en bijdragen van de medische gemeenschap om de zorg voor ECD-pati\u00ebnten te verbeteren.[\/et_pb_text][et_pb_text module_class=”event-table” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]\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>English Video<\/th>\n<\/tr>\n<\/thead>\n
Lorenzo Dagna, MD, PhD<\/td>Welcome & Overview of ECD<\/a><\/td>Welcome and Overview - Dearbhaile Dhubhlaoich & Lorenzo Dagna<\/a><\/td>\n<\/tr>\n
Lorenzo Dagna, MD, PhD<\/td>Drug Management<\/a><\/td>Overview of ECD and Drug Management - Lorenzo Dagna<\/a><\/td>\n<\/tr>\n
Filip Janku, MD, PhD<\/td>The Drug Trial Process<\/a><\/td>The Drug Trial Process - Filip Janku<\/a><\/td>\n<\/tr>\n
Julien Haroche , MD, PhD<\/td>Organ Involvement in ECD<\/td>Organ Involvement in ECD - Julien Haroche<\/a><\/td>\n<\/tr>\n
Eli L. Diamond, MD<\/td>ECD and the Brain<\/a><\/td>ECD and the Brain <\/a>- Eli Diamond<\/td>\n<\/tr>\n
Ronald Go, MD (moderator)<\/td>Question & Answer with the Experts<\/td>Expert Question & Answer Panel<\/a><\/td>\n<\/tr>\n
Stephane Barete, MD, PhD<\/td>Skin Involvement<\/a><\/td>Skin Involvement with ECD - St\u00e9phane Barete<\/a><\/td>\n<\/tr>\n
Mark Heaney, MD, PhD<\/td>Mutations in ECD<\/a><\/td>Mutations in ECD - Mark Heaney<\/a><\/td>\n<\/tr>\n
Carine Courtillot, MD<\/td>Endocrinology & Hormones<\/a><\/td>Endocrine Manifestations - Carine Courtillot<\/a><\/td>\n<\/tr>\n
Augusto Vaglio, MD, PhD<\/td>Renal & Ureteral Involvement<\/a><\/td>Renal & Ureteral Involvement in ECD - Augusto Vaglio<\/a><\/td>\n<\/tr>\n
Roei Mazor<\/td>Daily Care<\/td>Daily Care - Roei Mazor<\/a><\/td>\n<\/tr>\n
Eli Diamond, MD<\/td>ECD Registry Update<\/a><\/td>ECD Patient Registry Update - Eli Diamond<\/a><\/td>\n<\/tr>\n
ECDGA<\/td>ECDGA Close<\/td>Close - The ECD Global Alliance Team<\/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=”{}”][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

Ervaringen van deelnemers<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ _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=”1_2″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

\u201cHet was geweldig om getuige te zijn van de toewijding en inzet die deze artsen toonden met betrekking tot de diagnose, behandeling en onderzoeksinspanningen op het gebied van ECD. Ik ben dankbaar voor deze zeldzame kans.\u201d<\/em><\/p>\n

\u2013 Leretha R. Thomas, ECD-verzorger<\/strong><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

\u201cIk werk al meer dan 20 jaar in de gezondheidszorg en heb nog nooit zo’n zorgzame en toegewijde groep zorgverleners en vrijwilligers gezien of ervaren!\u201d<\/em><\/p>\n

\u2013 Aanwezige ECD-pati\u00ebnt<\/strong><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”4.27.5″ _module_preset=”default” width=”65%” width_tablet=”80%” width_phone=”80%” width_last_edited=”on|phone” custom_padding=”||0px||false|false” locked=”off” 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

Foto’s<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”20px||0px||false|false” locked=”off” global_colors_info=”{}”]<\/p>\n

Medisch Symposium<\/h3>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”160486,160487,160488,160489,160490,160491,160492,160493,160494,160495,160496,160497,160498,160499,160500,160501,160502,160503,160504,160505,160506,160507,160508,160509,160510,160511,160512,160513,160514,160515,160516,160517,160518,160519,160520,160521,160522,160523,160524″ posts_number=”150″ 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=”5.5″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” locked=”off” global_colors_info=”{}”][\/et_pb_gallery][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” custom_margin=”20px||0px||false|false” locked=”off” global_colors_info=”{}”]<\/p>\n

Foto’s van de receptie\/het diner<\/h3>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”160525,160526″ posts_number=”150″ 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=”5.5″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” locked=”off” global_colors_info=”{}”][\/et_pb_gallery][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

Groepsfoto van de Milan International ECD Patient & Family Gathering 2019 Samenvatting pati\u00ebnten- en familiebijeenkomstDe Pati\u00ebnten- en familiebijeenkomst (PFG) van 2019 bracht 49 pati\u00ebnten en familieleden uit 10 landen samen. […]<\/p>\n","protected":false},"author":20,"featured_media":172876,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"\"\"<\/a>Location:<\/strong> Milan, Italy\r\n\r\n2019 Patient & Family Gathering Schedule of Events<\/strong>\r\n\r\nAll patients and loved ones interested in learning more about ECD and meeting other families are encouraged to attend the following events. The registration fee for the 2-day event includes access to all conference sessions, reception dining, as well as lunch and light refreshments during conference break times. The following meeting times are subject to change.\r\n\r\nAll events will be held at<\/strong>\r\nIRCCS San Raffaele Scientific Institute<\/strong>\r\nVita-Salute San Raffaele University\r\nVia Olgettina, 60\r\nI-20132 Milano \u2013 Italy\r\n\r\n[table id=31 \/]\r\n\r\nHotel & Lodging<\/strong>\r\n\r\nHotel Rafael is the recommended location for your event lodging. This hotel is conveniently located across the courtyard to the hospital\u2019s meeting spaces. There is no room block contracted by the ECDGA for this hotel; therefore, we recommend booking your room as soon as possible to ensure room availability. Follow the hotel\u2019s website for more information and to make a reservation. http:\/\/www.rafaelhotel.it\/en<\/a>\r\n\r\nAdditional Visit Information<\/strong>\r\n\r\nCurrency Conversion Calculator<\/a>\r\nMedia tag: #ECDGA19\r\n\r\nAttendee Experiences<\/strong>\r\n\r\n[showmodule id=\"46785\"]","_et_gb_content_width":"","cybocfi_hide_featured_image":"yes","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4855],"tags":[],"class_list":["post-102363","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-bijeenkomst-voor-patient-en-familie"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/102363","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/comments?post=102363"}],"version-history":[{"count":47,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/102363\/revisions"}],"predecessor-version":[{"id":171167,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/posts\/102363\/revisions\/171167"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media\/172876"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/media?parent=102363"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/categories?post=102363"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nl\/wp-json\/wp\/v2\/tags?post=102363"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}