{"id":102362,"date":"2019-01-11T19:47:40","date_gmt":"2019-01-12T01:47:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/7-raduno-internazionale-dei-pazienti-e-delle-famiglie-ecd-milano-italia\/"},"modified":"2026-06-18T08:45:40","modified_gmt":"2026-06-18T13:45:40","slug":"7-raduno-internazionale-dei-pazienti-e-delle-famiglie-ecd-milano-italia","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/it\/7-raduno-internazionale-dei-pazienti-e-delle-famiglie-ecd-milano-italia\/","title":{"rendered":"7\u00b0 Raduno Annuale dei Pazienti e delle Famiglie ECD Milano, Italia"},"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 Ospedale San Raffaele” _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=”Milano, Italia” _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 luglio 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=”PFG Milano” 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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Foto di gruppo dell’Incontro Internazionale per Pazienti e Famiglie ECD di Milano 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

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

L’Incontro per Pazienti e Famiglie (PFG) del 2019 ha riunito 49 pazienti e familiari provenienti da 10 paesi. La comunit\u00e0 di pazienti e famiglie \u00e8 stata affiancata da 38 medici e scienziati appassionati nella cura dei pazienti e desiderosi di saperne di pi\u00f9 sulla Malattia di Erdheim-Chester. Dieci medici\/scienziati hanno tenuto presentazioni sull’ECD e sulle esigenze di supporto per l’ECD. \u00c8 stata organizzata una Cena di Gala con tutti i partecipanti, offrendo l’opportunit\u00e0 di condividere momenti di convivialit\u00e0 e riconoscere i leader della comunit\u00e0 che dedicano il loro tempo e le loro risorse per aiutare la comunit\u00e0 ECD. Consulta le informazioni qui sotto per maggiori dettagli sulle attivit\u00e0 e le presentazioni del PFG, nonch\u00e9 le foto della conferenza. <\/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

Programmi con l’agenda dell’incontro<\/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=”Immagine1(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=”Picture1(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=”Picture1(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=”Picture1(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

Presentazione<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=”4.27.6″ _module_preset=”default” global_colors_info=”{}” theme_builder_area=”post_content”]Le seguenti presentazioni sono state aggiunte nella speranza che possano aiutare i pazienti, le famiglie e i medici interessati a saperne di pi\u00f9 sull’ECD<\/a>. L’ECDGA \u00e8 grata per gli sforzi e i contributi della comunit\u00e0 medica volti a migliorare l’assistenza ai pazienti affetti da ECD.[\/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

Esperienze dei partecipanti<\/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

\u201c\u00c8 stato incredibile testimoniare la dedizione e l’impegno che questi medici hanno dimostrato nella diagnosi, nel trattamento e negli sforzi di ricerca relativi alla ECD. Sono grata per questa rara opportunit\u00e0.\u201d<\/em><\/p>\n

\u2013 Leretha R. Thomas, caregiver ECD<\/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

\u201cLavoro nel settore sanitario da oltre 20 anni e non ho mai visto n\u00e9 conosciuto un gruppo di professionisti sanitari e volontari cos\u00ec premuroso e devoto!\u201d<\/em><\/p>\n

\u2013 Paziente ECD presente all’evento<\/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

Fotografie<\/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

Simposio medico<\/h3>\n

[\/et_pb_text][et_pb_gallery gallery_ids=”160813,160814,160815,160816,160817,160818,160819,160820,160821,160822,160823,160824,160825,160826,160827,160828,160829,160830,160831,160832,160833,160834,160835,160836,160837,160838,160839,160840,160841,160842,160843,160844,160845,160846,160847,160848,160849,160850,160851″ 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

Foto del ricevimento e della cena<\/h3>\n

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Foto di gruppo dell’Incontro Internazionale per Pazienti e Famiglie ECD di Milano 2019 Riepilogo dell’Incontro per Pazienti e FamiglieL’Incontro per Pazienti e Famiglie (PFG) del 2019 ha riunito 49 pazienti […]<\/p>\n","protected":false},"author":20,"featured_media":102947,"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":[4852],"tags":[],"class_list":["post-102362","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\/102362","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=102362"}],"version-history":[{"count":9,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102362\/revisions"}],"predecessor-version":[{"id":161064,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/posts\/102362\/revisions\/161064"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media\/102947"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/media?parent=102362"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/categories?post=102362"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/it\/wp-json\/wp\/v2\/tags?post=102362"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}