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[\/et_pb_text][et_pb_blurb title=\u00a0\u00bbInstagram\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.instagram.com\/erdheim_chester\/?hl=en\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Instagram est une application de r\u00e9seau social permettant de partager des photos et des vid\u00e9os \u00e0 partir d’un smartphone. \u00c0 l’instar de Facebook ou de Twitter, toute personne qui cr\u00e9e un compte Instagram dispose d’un profil et d’un fil d’actualit\u00e9. Lorsque vous publiez une photo ou une vid\u00e9o sur Instagram, elle s’affiche sur votre profil.
ECDGA handle : @erdheim_chester Suggestions de hashtags : #ECDAwareness #ErdheimChester #ErdheimChesterDisease <\/p>\n
[\/et_pb_blurb][et_pb_blurb title=\u00a0\u00bb Sessions de chat\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.erdheim-chester.org\/fr\/chats-communautaires\/\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||fa||900″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Les membres rejoignent la session de chat qui correspond \u00e0 leur r\u00f4le pour discuter de divers sujets. Ces sessions en ligne sont un excellent moyen de faire connaissance avec les autres familles du site ECD, de poser des questions, de partager votre histoire et de trouver de la compagnie. <\/p>\n
[\/et_pb_blurb][et_pb_blurb title=\u00a0\u00bb LinkedIn\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.linkedin.com\/company\/erdheim-chester-disease-global-alliance-npo\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Ce compte permet aux professionnels de la sant\u00e9, aux d\u00e9fenseurs des maladies rares et \u00e0 d’autres parties prenantes de rester en contact avec les actualit\u00e9s m\u00e9dicales li\u00e9es \u00e0 ECD. Pour suivre la page ECDGA, vous devez \u00eatre membre de LinkedIn. <\/p>\n
[\/et_pb_blurb][et_pb_blurb title=\u00a0\u00bb ECDGA Page publique Facebook\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.facebook.com\/ErdheimChesterDisease\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Il s’agit d’une page publique, accessible \u00e0 tous. Le ECDGA publie des messages et tout le monde peut y r\u00e9pondre ou y r\u00e9agir. Le ECDGA publie des sujets sur les activit\u00e9s de l’organisation ou les initiatives de l’organisation. <\/p>\n
[\/et_pb_blurb][et_pb_blurb title=\u00a0\u00bb ECDGA Groupe priv\u00e9 sur Facebook\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.facebook.com\/groups\/784637751599933″ url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Pour \u00e9viter les sollicitations, ce groupe est r\u00e9serv\u00e9 aux patients, \u00e0 leur famille et \u00e0 leurs amis proches. Les personnes doivent \u00eatre approuv\u00e9es par l’administration pour devenir membres de ce groupe, qui v\u00e9rifiera qu’elles connaissent un membre enregistr\u00e9 du site ECDGA. Une fois membre, vous pouvez inviter d’autres personnes \u00e0 rejoindre le groupe en tant que membres. L’objectif de ce groupe est de permettre le partage entre les personnes touch\u00e9es par ECD. <\/p>\n
[\/et_pb_blurb][et_pb_blurb title=\u00a0\u00bb Page Facebook (espagnol)\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.facebook.com\/groups\/725082820904214\/\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Il s’agit d’un groupe ferm\u00e9, semblable au groupe Facebook priv\u00e9 d\u00e9crit ci-dessus, mais sp\u00e9cifiquement destin\u00e9 aux membres hispanophones.<\/p>\n
[\/et_pb_blurb][et_pb_blurb title=\u00a0\u00bb Page Facebook (fran\u00e7ais)\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.facebook.com\/groups\/276715579179146\/\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Il s’agit d’un groupe public, mais les utilisateurs de Facebook doivent s’y inscrire avant de publier des messages. Cependant, le public peut voir les messages sans s’inscrire. Ce groupe n’est pas r\u00e9glement\u00e9 ou contr\u00f4l\u00e9 directement par le site ECDGA. <\/p>\n
[\/et_pb_blurb][et_pb_blurb title=\u00a0\u00bb YouTube\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/www.youtube.com\/@ECDGA\/playlists\u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb use_icon=\u00a0\u00bbon\u00a0\u00bb font_icon=\u00a0\u00bb||divi||400″ icon_color=\u00a0\u00bb#C02E43″ icon_placement=\u00a0\u00bbleft\u00a0\u00bb content_max_width=\u00a0\u00bb100%\u00a0\u00bb _builder_version=\u00a0\u00bb4.27.4″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n
Retrouvez les vid\u00e9os cr\u00e9\u00e9es par ECDGA et d’autres sur cette cha\u00eene. N’oubliez pas de partager, de commenter ou d’aimer vos vid\u00e9os pr\u00e9f\u00e9r\u00e9es ! <\/p>\n
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