{"id":102359,"date":"2019-01-11T19:47:40","date_gmt":"2019-01-12T01:47:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/7-internationales-ecd-treffen-fuer-patienten-und-familien-mailand-italien\/"},"modified":"2026-06-18T08:45:35","modified_gmt":"2026-06-18T13:45:35","slug":"7-internationales-ecd-treffen-fuer-patienten-und-familien-mailand-italien","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/de\/7-internationales-ecd-treffen-fuer-patienten-und-familien-mailand-italien\/","title":{"rendered":"7. j\u00e4hrliches ECD-Treffen f\u00fcr Patienten und Familien Mailand, Italien"},"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=”{}” 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=”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=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”][\/et_pb_button][et_pb_button button_text=”Mailand, Italien” _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=”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=”{}” 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\/06\/Picture11.png” title_text=”Mailand PFG” 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=”{}” theme_builder_area=”post_content”][\/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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Gruppenfoto der Internationalen ECD Patienten- & Familienzusammenkunft in Mailand 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=”{}” 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

Zusammenfassung des Patienten- und Familientreffens<\/h2>\n

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

Die Patienten- & Familienzusammenkunft (PFG) 2019 brachte 49 Patienten und Familienmitglieder aus 10 L\u00e4ndern zusammen. Der Patienten-\/Familien-Community schlossen sich 38 Kliniker und Wissenschaftler an, die sich leidenschaftlich der Patientenversorgung widmen und mehr \u00fcber die Erdheim-Chester-Krankheit erfahren m\u00f6chten. Zehn Kliniker\/Wissenschaftler hielten Vortr\u00e4ge \u00fcber ECD und den Unterst\u00fctzungsbedarf bei ECD. Ein festliches Abendessen mit allen Teilnehmern wurde genossen, das Zeit f\u00fcr Gemeinschaft und die Anerkennung von Gemeindeleitern bot, die ihre Zeit und Ressourcen der Unterst\u00fctzung der ECD-Gemeinschaft widmen. Weitere Informationen zu den PFG-Aktivit\u00e4ten und -Pr\u00e4sentationen sowie Bilder von der Konferenz finden Sie unten. <\/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” 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

Programme mit der Agenda des Treffens<\/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=”{}” theme_builder_area=”post_content”][et_pb_column type=”1_4″ _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\/Picture12.png” title_text=”Picture1(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=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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\/Picture13.png” title_text=”Bild1(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=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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\/Picture14.png” title_text=”Bild1(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=”{}” theme_builder_area=”post_content”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_4″ _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\/Picture15.png” title_text=”Bild1(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=”{}” theme_builder_area=”post_content”][\/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=”{}” 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

Pr\u00e4sentation<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]Die folgenden Pr\u00e4sentationen wurden hinzugef\u00fcgt in der Hoffnung, dass sie Patienten, Familien und \u00c4rzten helfen, die mehr \u00fcber ECD<\/a> erfahren m\u00f6chten. Die ECDGA ist dankbar f\u00fcr die Bem\u00fchungen und Beitr\u00e4ge der medizinischen Fachwelt zur Verbesserung der Versorgung von ECD-Patienten.[\/et_pb_text][et_pb_text module_class=”event-table” _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]\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=”{}” 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

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

\u201eEs war beeindruckend, die Hingabe und das Engagement zu erleben, die diese \u00c4rzte bei der Diagnose, Behandlung und den Forschungsbem\u00fchungen im Zusammenhang mit ECD an den Tag legten. Ich bin dankbar f\u00fcr diese seltene Gelegenheit.\u201c<\/em><\/p>\n

\u2013 Leretha R. Thomas, ECD-Pflegekraft<\/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=”{}” theme_builder_area=”post_content”][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]<\/p>\n

\u201eIch bin seit \u00fcber 20 Jahren im Gesundheitswesen t\u00e4tig und habe noch nie eine so f\u00fcrsorgliche und engagierte Gruppe von medizinischen Fachkr\u00e4ften und Freiwilligen gesehen oder erlebt!\u201c<\/em><\/p>\n

\u2013 Anwesender ECD-Patient<\/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=”{}” 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

Fotografien<\/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=”{}” theme_builder_area=”post_content”]<\/p>\n

Medizinisches Symposium<\/h3>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”160530,160531,160532,160533,160534,160535,160536,160537,160538,160539,160540,160541,160542,160543,160544,160545,160546,160547,160548,160549,160550,160551,160552,160553,160554,160555,160556,160557,160558,160559,160560,160561,160562,160563,160564,160565,160566,160567,160568″ 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=”5.1.1″ db_image_object_fit=”cover” border_radii_image=”on|8px|8px|8px|8px” locked=”off” global_colors_info=”{}” theme_builder_area=”post_content”][\/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=”{}” theme_builder_area=”post_content”]<\/p>\n

Fotos vom Empfang\/Abendessen<\/h3>\n

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Gruppenfoto der Internationalen ECD Patienten- & Familienzusammenkunft in Mailand 2019 Zusammenfassung des Patienten- und FamilientreffensDie Patienten- & Familienzusammenkunft (PFG) 2019 brachte 49 Patienten und Familienmitglieder aus 10 L\u00e4ndern zusammen. Der […]<\/p>\n","protected":false},"author":20,"featured_media":102943,"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":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[4859],"tags":[],"class_list":["post-102359","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-treffen-von-patienten-und-familien"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/102359","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/comments?post=102359"}],"version-history":[{"count":9,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/102359\/revisions"}],"predecessor-version":[{"id":161060,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/102359\/revisions\/161060"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media\/102943"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media?parent=102359"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/categories?post=102359"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/tags?post=102359"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}