{"id":102361,"date":"2019-01-11T19:47:40","date_gmt":"2019-01-12T01:47:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/7eme-reunion-internationale-des-patients-et-des-familles-des-ecd-milan-italie\/"},"modified":"2026-06-18T08:45:34","modified_gmt":"2026-06-18T13:45:34","slug":"7eme-reunion-internationale-des-patients-et-des-familles-des-ecd-milan-italie","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/fr\/7eme-reunion-internationale-des-patients-et-des-familles-des-ecd-milan-italie\/","title":{"rendered":"7\u00e8me r\u00e9union annuelle des patients et des familles des ECD Milan, Italie"},"content":{"rendered":"

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button_text=\u00a0\u00bbInstitut Scientifique IRCCS San Raffaele\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ button_bg_color=\u00a0\u00bbRGBA(255,255,255,0)\u00a0\u00bb button_border_radius=\u00a0\u00bb0px\u00a0\u00bb button_icon=\u00a0\u00bb||fa||900″ button_icon_color=\u00a0\u00bb#35A4BB\u00a0\u00bb button_icon_placement=\u00a0\u00bbleft\u00a0\u00bb button_on_hover=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][\/et_pb_button][et_pb_button button_text=\u00a0\u00bbMilan, Italie\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_button=\u00a0\u00bbon\u00a0\u00bb button_text_size=\u00a0\u00bb16px\u00a0\u00bb button_text_color=\u00a0\u00bb#000000″ 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Photo de groupe du Rassemblement international 2019 des patients et des familles atteints d\u2019ECD \u00e0 Milan<\/p>\n<\/div>\n<\/div>\n

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R\u00e9sum\u00e9 de la r\u00e9union des patients et des familles<\/h2>\n

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Le Rassemblement des patients et des familles (PFG) 2019 a r\u00e9uni 49 patients et membres de familles provenant de 10 pays. La communaut\u00e9 des patients et des familles a \u00e9t\u00e9 rejointe par 38 cliniciens et scientifiques passionn\u00e9s par les soins aux patients et d\u00e9sireux d’en savoir plus sur la maladie d’Erdheim-Chester. Dix cliniciens\/scientifiques ont pr\u00e9sent\u00e9 des expos\u00e9s sur l’ECD et les besoins en mati\u00e8re de soutien aux patients atteints d’ECD. Un d\u00eener de c\u00e9l\u00e9bration r\u00e9unissant tous les participants a \u00e9t\u00e9 organis\u00e9, permettant des moments de convivialit\u00e9 et la reconnaissance des leaders communautaires qui consacrent leur temps et leurs ressources pour aider la communaut\u00e9 ECD. Veuillez consulter les informations ci-dessous pour en savoir plus sur les activit\u00e9s et pr\u00e9sentations du PFG, ainsi que les photos de la conf\u00e9rence. <\/p>\n

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Programmes avec l\u2019ordre du jour de la rencontre<\/h2>\n

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Pr\u00e9sentation<\/h2>\n

[\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb]Les pr\u00e9sentations suivantes ont \u00e9t\u00e9 ajout\u00e9es dans l\u2019espoir qu\u2019elles aideront les patients, les familles et les m\u00e9decins souhaitant en savoir plus sur l\u2019ECD<\/a>. L\u2019ECDGA est reconnaissante des efforts et des contributions de la communaut\u00e9 m\u00e9dicale pour am\u00e9liorer les soins aux patients atteints d\u2019ECD.[\/et_pb_text][et_pb_text module_class=\u00a0\u00bbevent-table\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb]\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=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb width=\u00a0\u00bb65%\u00a0\u00bb width_tablet=\u00a0\u00bb80%\u00a0\u00bb width_phone=\u00a0\u00bb80%\u00a0\u00bb width_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb custom_padding=\u00a0\u00bb||0px||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_margin=\u00a0\u00bb||15px||false|false\u00a0\u00bb border_width_bottom=\u00a0\u00bb2px\u00a0\u00bb border_color_bottom=\u00a0\u00bb#35A4BB\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb]<\/p>\n

Exp\u00e9riences des participants<\/h2>\n

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\u00ab C’\u00e9tait extraordinaire d’\u00eatre t\u00e9moin du d\u00e9vouement et de l’engagement dont ces m\u00e9decins ont fait preuve concernant le diagnostic, le traitement et les efforts de recherche li\u00e9s \u00e0 l’ECD. Je suis reconnaissante pour cette opportunit\u00e9 rare. \u00bb<\/em><\/p>\n

\u2013 Leretha R. Thomas, aidante d’un patient atteint d’ECD<\/strong><\/p>\n

[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_2″ _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb4.27.6″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb theme_builder_area=\u00a0\u00bbpost_content\u00a0\u00bb]<\/p>\n

\u00ab Je travaille dans le secteur de la sant\u00e9 depuis plus de 20 ans et je n’ai jamais vu ni connu un groupe de professionnels de sant\u00e9 et de b\u00e9n\u00e9voles aussi attentionn\u00e9s et d\u00e9vou\u00e9s ! \u00bb<\/em><\/p>\n

\u2013 Patient atteint d’ECD pr\u00e9sent<\/strong><\/p>\n

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Photographies<\/h2>\n

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Symposium m\u00e9dical<\/h3>\n

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Photos de la r\u00e9ception\/du d\u00eener<\/h3>\n

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Photo de groupe du Rassemblement international 2019 des patients et des familles atteints d\u2019ECD \u00e0 Milan R\u00e9sum\u00e9 de la r\u00e9union des patients et des famillesLe Rassemblement des patients et des […]<\/p>\n","protected":false},"author":20,"featured_media":102942,"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":[4853],"tags":[],"class_list":["post-102361","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rassemblement-des-patients-et-des-familles"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102361","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/comments?post=102361"}],"version-history":[{"count":11,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102361\/revisions"}],"predecessor-version":[{"id":161059,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/posts\/102361\/revisions\/161059"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media\/102942"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/media?parent=102361"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/categories?post=102361"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/fr\/wp-json\/wp\/v2\/tags?post=102361"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}