{"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":"2026-05-25T10:22:09","modified_gmt":"2026-05-25T15:22:09","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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Dagna, MD, FACP\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||400″ 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][\/et_pb_button][et_pb_button 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 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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

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb4.27.5″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb custom_padding=\u00a0\u00bb0px||||false|false\u00a0\u00bb locked=\u00a0\u00bboff\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][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\u00bb10px||||false|false\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb width__hover_enabled=\u00a0\u00bboff|desktop\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][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]<\/p>\n

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

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Tous les patients et leurs proches int\u00e9ress\u00e9s \u00e0 en savoir plus sur l\u2019ECD<\/a> et \u00e0 rencontrer d\u2019autres familles sont encourag\u00e9s \u00e0 participer aux \u00e9v\u00e9nements<\/a> suivants. Les frais d\u2019inscription pour l\u2019\u00e9v\u00e9nement de 2 jours incluent l\u2019acc\u00e8s \u00e0 toutes les sessions de la conf\u00e9rence, le d\u00eener de r\u00e9ception, ainsi que le d\u00e9jeuner et les rafra\u00eechissements l\u00e9gers pendant les pauses de la conf\u00e9rence. Les horaires de r\u00e9union suivants sont sujets \u00e0 modification. <\/p>\n

L\u2019h\u00f4tel Rafael est l\u2019\u00e9tablissement recommand\u00e9 pour votre h\u00e9bergement lors de l\u2019\u00e9v\u00e9nement. Cet h\u00f4tel est id\u00e9alement situ\u00e9 de l\u2019autre c\u00f4t\u00e9 de la cour, en face des espaces de r\u00e9union de l\u2019h\u00f4pital. L\u2019ECDGA n\u2019a pas n\u00e9goci\u00e9 de contingent de chambres pour cet h\u00f4tel ; nous vous recommandons donc de r\u00e9server votre chambre d\u00e8s que possible afin de garantir la disponibilit\u00e9. Consultez le site web de l\u2019h\u00f4tel pour plus d\u2019informations et pour effectuer une r\u00e9servation<\/a>. <\/p>\n

Tous les \u00e9v\u00e9nements<\/a> se tiendront \u00e0<\/strong>
l’Institut scientifique IRCCS San Raffaele<\/strong>
Universit\u00e9 Vita-Salute San Raffaele
Via Olgettina, 60
I-20132 Milan \u2013 Italie<\/p>\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]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]\n\n\n\n\t\n\n\t\n\t\n\t
DATE<\/th>TIME<\/th>EVENT<\/th>DESCRIPTION<\/th>\n<\/tr>\n<\/thead>\n
Thursday
\nJuly 11, 2019
\n<\/td>		3 PM TO 5 PM<\/td>Group Activity<\/td>A group activity may be scheduled for this time frame to allow more social time for families in attendance. This opportunity is still under consideration and will be announced once plans are firm.<\/td>\n<\/tr>\n
Thursday
\nJuly 11, 2019
\n<\/td>		6 PM to 8 PM<\/td>Welcome Social<\/td>All event attendees are welcome to attend this social event to encourage connections between the families and medical professionals. Hor d\u2019oeuvres will be served.<\/td>\n<\/tr>\n
Friday
\nJuly 12, 2019
\n(Registration 8 \u2013 9 a.m.)<\/td>		9 AM to 5 PM<\/td>Patient & Family Gathering<\/td>Medical speakers experienced in ECD treatment will present the latest ECD care information to families and other treating physicians.<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n
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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

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\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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