{"id":54054,"date":"2015-01-19T17:12:54","date_gmt":"2015-01-19T23:12:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/connettiti-con-gli-altri\/"},"modified":"2026-05-05T22:14:07","modified_gmt":"2026-05-06T03:14:07","slug":"connettiti-con-gli-altri","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/it\/connettiti-con-gli-altri\/","title":{"rendered":"Connettiti con gli altri"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; background_image=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2024\/12\/Untitled-design-96-1.png&#8221; background_position=&#8221;bottom_center&#8221; background_vertical_offset=&#8221;20%&#8221; custom_padding=&#8221;0px||0px||true|false&#8221; background_last_edited=&#8221;on|desktop&#8221; background_position_tablet=&#8221;bottom_right&#8221; background_position_phone=&#8221;center_right&#8221; global_module=&#8221;28071&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_dmb_breadcrumbs _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; body_text_color=&#8221;#FFFFFF&#8221; body_font_size=&#8221;12px&#8221; link_text_color=&#8221;#35A4BB&#8221; custom_margin=&#8221;||5px||false|false&#8221; custom_padding=&#8221;||0px||false|false&#8221; body_font_size_tablet=&#8221;12px&#8221; body_font_size_phone=&#8221;10px&#8221; body_font_size_last_edited=&#8221;on|desktop&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_dmb_breadcrumbs][et_pb_heading title=&#8221;@ET-DC@eyJkeW5hbWljIjp0cnVlLCJjb250ZW50IjoicG9zdF90aXRsZSIsInNldHRpbmdzIjp7ImJlZm9yZSI6IiIsImFmdGVyIjoiIn19@&#8221; _builder_version=&#8221;4.27.4&#8243; _dynamic_attributes=&#8221;title&#8221; _module_preset=&#8221;default&#8221; title_font=&#8221;&#8211;et_global_heading_font|300|||||||&#8221; title_text_color=&#8221;#FFFFFF&#8221; title_font_size=&#8221;40px&#8221; custom_margin=&#8221;||3px|||&#8221; title_font_size_tablet=&#8221;&#8221; title_font_size_phone=&#8221;25px&#8221; title_font_size_last_edited=&#8221;on|phone&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_heading][et_pb_button button_url=&#8221;https:\/\/www.erdheim-chester.org\/it\/contattaci\/&#8221; button_text=&#8221;Contattaci&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; custom_button=&#8221;on&#8221; button_text_size=&#8221;15px&#8221; button_text_color=&#8221;#C02E43&#8243; button_bg_color=&#8221;rgba(10,22,64,0.53)&#8221; button_border_width=&#8221;0px&#8221; button_icon=&#8221;&#xe60f;||divi||400&#8243; button_icon_color=&#8221;#C02E43&#8243; button_icon_placement=&#8221;left&#8221; button_on_hover=&#8221;off&#8221; global_colors_info=&#8221;{}&#8221; filter_opacity__hover_enabled=&#8221;on|hover&#8221; filter_opacity__hover=&#8221;70%&#8221;][\/et_pb_button][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=&#8221;1&#8243; admin_label=&#8221;section&#8221; _builder_version=&#8221;4.16&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row column_structure=&#8221;2_3,1_3&#8243; admin_label=&#8221;fila&#8221; _builder_version=&#8221;4.16&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;2_3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_text admin_label=&#8221;Text&#8221; _builder_version=&#8221;4.27.4&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<h2>Connettiti attraverso i social media<\/h2>\n<p>[\/et_pb_text][et_pb_blurb title=&#8221;Instagram&#8221; url=&#8221;https:\/\/www.instagram.com\/erdheim_chester\/?hl=en&#8221; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xe0b1;||divi||400&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Instagram \u00e8 un&#8217;applicazione di social networking creata per condividere foto e video da uno smartphone. Simile a Facebook o Twitter, tutti coloro che creano un account Instagram hanno un profilo e un feed di notizie. Quando pubblichi una foto o un video su Instagram, questa viene visualizzata sul tuo profilo.<br \/>ECDGA handle: @erdheim_chester Suggerimenti per gli hashtag: #ECDAwareness #ErdheimChester #ErdheimChesterDisease  <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  Sessioni di chat&#8221; url=&#8221;https:\/\/www.erdheim-chester.org\/it\/chat-della-comunita\/&#8221; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xf4ad;||fa||900&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>I membri si uniscono alla sessione di chat pi\u00f9 adatta al loro ruolo per discutere di vari argomenti. Queste sessioni online sono un ottimo modo per conoscere le famiglie di ECD, fare domande, condividere la propria storia e trovare compagnia. <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  LinkedIn&#8221; url=&#8221;https:\/\/www.linkedin.com\/company\/erdheim-chester-disease-global-alliance-npo&#8221; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xe0b4;||divi||400&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Questo account \u00e8 una fonte per i professionisti del settore medico, per i sostenitori delle malattie rare e per altre persone interessate a rimanere in contatto con le notizie mediche relative a ECD. Per seguire la pagina ECDGA, devi essere un membro di LinkedIn. <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  ECDGA Pagina Facebook pubblica&#8221; url=&#8221;https:\/\/www.facebook.com\/ErdheimChesterDisease&#8221; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xe0aa;||divi||400&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Questa \u00e8 una pagina pubblica, accessibile da chiunque. Il sito ECDGA pubblica dei messaggi e chiunque pu\u00f2 rispondere o reagire a tali messaggi. Il sito ECDGA pubblica argomenti su ci\u00f2 che accade nell&#8217;organizzazione o sulle iniziative dell&#8217;organizzazione.  <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  ECDGA Gruppo privato su Facebook&#8221; url=&#8221;https:\/\/www.facebook.com\/groups\/784637751599933&#8243; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xe0aa;||divi||400&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Per evitare che i clienti siano adescati, questo \u00e8 un gruppo chiuso per i pazienti, i familiari e gli amici pi\u00f9 stretti. Le persone devono essere approvate dall&#8217;amministrazione per diventare membri di questo gruppo, che verificher\u00e0 che conoscano un membro registrato di ECDGA. Una volta che sei un membro, puoi invitare altre persone a unirsi al gruppo. Lo scopo di questo gruppo \u00e8 quello di consentire la condivisione tra le persone colpite da ECD.   <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  Pagina Facebook (spagnolo)&#8221; url=&#8221;https:\/\/www.facebook.com\/groups\/725082820904214\/&#8221; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xe0aa;||divi||400&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Si tratta di un gruppo chiuso, simile al gruppo privato di Facebook descritto sopra, ma specifico per i membri di lingua spagnola.<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  Pagina Facebook (francese)&#8221; url=&#8221;https:\/\/www.facebook.com\/groups\/276715579179146\/&#8221; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xe0aa;||divi||400&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Questo \u00e8 un gruppo pubblico, ma gli utenti di Facebook devono comunque iscriversi prima di postare. Tuttavia, il pubblico pu\u00f2 vedere i post senza iscriversi. Questo gruppo non \u00e8 regolato o monitorato direttamente dal sito ECDGA.  <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  YouTube&#8221; url=&#8221;https:\/\/www.youtube.com\/@ECDGA\/playlists&#8221; url_new_window=&#8221;on&#8221; use_icon=&#8221;on&#8221; font_icon=&#8221;&#xe0ba;||divi||400&#8243; icon_color=&#8221;#C02E43&#8243; icon_placement=&#8221;left&#8221; content_max_width=&#8221;100%&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Trova i video creati da ECDGA e da altri su questo canale. Assicurati di condividere, commentare o mettere &#8220;mi piace&#8221; ai tuoi preferiti! <\/p>\n<p>[\/et_pb_blurb][\/et_pb_column][et_pb_column type=&#8221;1_3&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_image src=&#8221;https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2015\/01\/shutterstock_112481411.png&#8221; title_text=&#8221;shutterstock_112481411&#8243; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>[et_pb_dmb_breadcrumbs _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; body_text_color=&#8221;#FFFFFF&#8221; body_font_size=&#8221;12px&#8221; link_text_color=&#8221;#35A4BB&#8221; custom_margin=&#8221;||5px||false|false&#8221; custom_padding=&#8221;||0px||false|false&#8221; body_font_size_tablet=&#8221;12px&#8221; body_font_size_phone=&#8221;10px&#8221; body_font_size_last_edited=&#8221;on|desktop&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_dmb_breadcrumbs]Connettiti attraverso i social mediaInstagram \u00e8 un&#8217;applicazione di social networking creata per condividere foto e video da uno smartphone. 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