{"id":54482,"date":"2015-01-19T17:12:54","date_gmt":"2015-01-19T23:12:54","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/conecte-se-com-outras-pessoas\/"},"modified":"2026-05-05T22:13:52","modified_gmt":"2026-05-06T03:13:52","slug":"conecte-se-com-outras-pessoas","status":"publish","type":"page","link":"https:\/\/www.erdheim-chester.org\/pt-br\/conecte-se-com-outras-pessoas\/","title":{"rendered":"Conecte-se com outras pessoas"},"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\/pt-br\/entre-em-contato-conosco\/&#8221; button_text=&#8221;Entre em contato conosco&#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>Conecte-se por meio da m\u00eddia social<\/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>O Instagram \u00e9 um aplicativo de rede social criado para compartilhar fotos e v\u00eddeos de um smartphone. Semelhante ao Facebook ou Twitter, todos que criam uma conta no Instagram t\u00eam um perfil e um feed de not\u00edcias. Quando voc\u00ea publica uma foto ou um v\u00eddeo no Instagram, ele \u00e9 exibido em seu perfil.<br \/>ECDGA handle: @erdheim_chester Sugest\u00f5es de hashtag: #ECDAwareness #ErdheimChester #ErdheimChesterDisease  <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  Sess\u00f5es de bate-papo&#8221; url=&#8221;https:\/\/www.erdheim-chester.org\/pt-br\/chats-da-comunidade\/&#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>Os membros entram na sess\u00e3o de bate-papo adequada \u00e0 sua fun\u00e7\u00e3o para discutir v\u00e1rios t\u00f3picos. Essas sess\u00f5es on-line s\u00e3o uma \u00f3tima maneira de conhecer as fam\u00edlias ECD, fazer perguntas, compartilhar sua hist\u00f3ria e encontrar companheirismo. <\/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>Essa conta \u00e9 uma fonte para que profissionais da \u00e1rea m\u00e9dica, defensores de doen\u00e7as raras e outras partes interessadas se mantenham conectados \u00e0s not\u00edcias m\u00e9dicas relacionadas a ECD. Para seguir a p\u00e1gina ECDGA, voc\u00ea deve ser membro do LinkedIn. <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  ECDGA P\u00e1gina p\u00fablica do Facebook&#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>Esta \u00e9 uma p\u00e1gina p\u00fablica, que pode ser acessada por qualquer pessoa. O ECDGA faz postagens e qualquer pessoa pode responder ou reagir a elas. O ECDGA publica t\u00f3picos sobre coisas que est\u00e3o acontecendo com a organiza\u00e7\u00e3o ou iniciativas da organiza\u00e7\u00e3o.  <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  ECDGA Grupo privado do 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>Para evitar solicitantes, este \u00e9 um grupo fechado para pacientes, familiares e amigos pr\u00f3ximos. As pessoas devem ser aprovadas pela administra\u00e7\u00e3o para se tornarem membros desse grupo, que verificar\u00e1 se elas conhecem um membro registrado do ECDGA. Depois de se tornar membro, voc\u00ea poder\u00e1 convidar outras pessoas para participarem como membros do grupo. O objetivo desse grupo \u00e9 permitir o compartilhamento entre as pessoas afetadas pelo ECD.   <\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  P\u00e1gina do Facebook (espanhol)&#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>Este \u00e9 um grupo fechado, muito parecido com o grupo privado do Facebook descrito acima, mas especificamente para membros que falam espanhol.<\/p>\n<p>[\/et_pb_blurb][et_pb_blurb title=&#8221;  P\u00e1gina do Facebook (franc\u00eas)&#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>Este \u00e9 um grupo p\u00fablico, mas um usu\u00e1rio do Facebook ainda deve se associar antes de publicar. No entanto, o p\u00fablico pode ver as publica\u00e7\u00f5es sem entrar. Esse grupo n\u00e3o \u00e9 regulamentado ou monitorado diretamente pelo 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>Voc\u00ea encontrar\u00e1 v\u00eddeos criados pelo ECDGA e outros neste canal. N\u00e3o deixe de compartilhar, comentar ou curtir seus favoritos! <\/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]Conecte-se por meio da m\u00eddia socialO Instagram \u00e9 um aplicativo de rede social criado para compartilhar fotos e v\u00eddeos [&hellip;]<\/p>\n","protected":false},"author":14,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_wds_title":"","_wds_metadesc":"","_wds_focus-keywords":"","_wds_meta-robots-adv":"","_wds_meta-robots-noindex":false,"_wds_meta-robots-nofollow":false,"_wds_meta-robots-index":false,"_wds_meta-robots-follow":false,"_wds_autolinks-exclude":false,"_wds_canonical":"","_wds_redirect":"","_wds_opengraph":[],"_wds_twitter":[],"cybocfi_hide_featured_image":"","footnotes":"","_links_to":"","_links_to_target":""},"class_list":["post-54482","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/pages\/54482","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/comments?post=54482"}],"version-history":[{"count":5,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/pages\/54482\/revisions"}],"predecessor-version":[{"id":130208,"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/pages\/54482\/revisions\/130208"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/pt-br\/wp-json\/wp\/v2\/media?parent=54482"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}