{"id":8552,"date":"2020-03-24T15:01:40","date_gmt":"2020-03-24T15:01:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=8552"},"modified":"2025-08-23T17:13:43","modified_gmt":"2025-08-23T21:13:43","slug":"samfunnskontakter-under-covid-19-pandemien","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/nb\/community-connections-during-covid-19\/","title":{"rendered":"Samfunnskontakter under COVID-19"},"content":{"rendered":"

Hensikten med bloggen v\u00e5r er \u00e5 holde dere oppdatert <\/span>v\u00e5re medlemmer <\/span>med viktig informasjon som kan <\/span>aff<\/span>p\u00e5virker hverdagen til pasienter med ECD<\/span> og deres familier<\/span>. Vi pr\u00f8ver \u00e5 gi denne informasjonen med hjelp fra en<\/span>nd<\/span> veiledning fra v\u00e5r <\/span>p\u00e5litelig <\/span>helsepersonell. <\/span>Forfall<\/span> p\u00e5 grunn av \u00f8kningen i antall COVID-19-tilfeller over hele verden og behovet for at alt v\u00e5rt medisinske personell skal v\u00e6re i frontlinjen<\/span> <\/span>linjer, vil blogginnleggene v\u00e5re v\u00e6re begrenset til ECDGA-teamets evner og kunnskap. <\/span> <\/span><\/p>\n

 <\/span>Denne uken, mens alle holder avstand til hverandre<\/span>,<\/span> da f\u00e5r vi litt mer inn<\/span>\u2013<\/span>en grundig gjennomgang av hvor viktig det er \u00e5 ikke <\/span>praktisk talt uten kontakt med hverandre<\/span>. <\/span> <\/span><\/p>\n

 <\/span>Admitting to yourself about your diagnosis can be very difficult. It can be even harder <\/span>\u00e5 snakke om det med familie, venner og kolleger. <\/span> <\/span>ECD Global Alliance er her for \u00e5 gi st\u00f8tte og informasjon, samt for \u00e5 fremme deres interesser<\/span>, noe som kan gj\u00f8re disse samtalene litt enklere<\/span>.<\/span> <\/span><\/p>\n

 <\/span>Selv om sykdommen din kanskje er sjelden, skal du vite at du ikke er alene! ECDGA tilbyr mange muligheter som gir pasienter, familier og omsorgspersoner muligheten til \u00e5 m\u00f8tes, kommunisere og finne h\u00e5p. Disse andre familiene vil bli venner, st\u00f8ttespillere, et st\u00f8ttenettverk og til og med et sted hvor du kan lufte f\u00f8lelsene dine n\u00e5r du har hatt en d\u00e5rlig dag. Vi oppfordrer deg til \u00e5 dele <\/span>stor og <\/span>sm\u00e5 seire <\/span>med hverandre!<\/span> <\/span> <\/span><\/p>\n

 <\/span>M\u00e5ter \u00e5 kommunisere med ECD Global Alliance p\u00e5<\/span> familien\u2026<\/span> <\/span><\/p>\n

 <\/span>ECDGA-teamet <\/span><\/b>E-post<\/span><\/b>s<\/span><\/b>: <\/span> <\/span><\/p>\n

Support@erdheim-chester.org<\/span><\/a> <\/span><\/p>\n

Jessica.Corkran@erdheim-chester.org<\/span><\/a> <\/span><\/p>\n

Chesnee.Green@erdheim-chester.org<\/span><\/a> <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Lokalt nettverk<\/span><\/b>:<\/span><\/b> <\/span><\/p>\n

 <\/span>ECD Global Alliance <\/span>kan <\/span>s\u00f8rge for <\/span>pasienter og omsorgspersoner med <\/span>kontaktopplysninger for de som bor i ditt omr\u00e5de<\/span>hele omr\u00e5det t<\/span>som har samtykket til at opplysningene deres deles med andre medlemmer. Send en e-post til Chesnee eller Jessica for mer informasjon (se e-postadressene<\/span>(som nevnt ovenfor).<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Sosiale medier<\/span><\/b>:<\/span><\/b> <\/span><\/p>\n

 <\/span>Facebook<\/span><\/i><\/b>: <\/span>https:\/\/www.facebook.com\/ErdheimChesterDisease<\/span><\/a> <\/span><\/p>\n

*This is the ECDGA\u2019s Facebook page that is updated with the most recent information available including all current events, publications, studies and trials, and so much more. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Facebook-gruppe<\/span><\/i><\/b>: <\/span>https:\/\/www.facebook.com\/groups\/784637751599933\/<\/span><\/a> <\/span><\/p>\n

 <\/span>*Dette er ECDGAs private gruppe*<\/span>. If you are a current member of the ECDGA you can access to this group. In this group you have the opportunity to speak openly with other members about ECD. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Twitter<\/span><\/i><\/b>: <\/span>https:\/\/twitter.com\/ECDGA<\/span><\/a> <\/span><\/p>\n

*This is the ECDGA\u2019s Twitter page that is updated with the most recent information available including all current events, publications, studies and trials, and so much more. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

YouTube<\/span><\/i><\/b>: <\/span>https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ<\/span><\/a> <\/span><\/p>\n

*Dette er den<\/span> offisiell<\/span> ECDGA p\u00e5 YouTube <\/span>kanal<\/span>. Here you will find informative videos about ECD, the Founder of the ECD Global Alliance, and videos from annual events (including medical professionals from around the world). <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

LinkedIn<\/span><\/i><\/b>:<\/span> <\/span>https:\/\/www.linkedin.com\/company\/erdheim-chester-disease-global-alliance-npo<\/span><\/a> <\/span><\/p>\n

*V\u00e5r LinkedIn-side <\/span>a<\/span>ccount is our professional profile that is also updated with the most recent information available including all current events, publications, studies and trials, and <\/span>alt av medisinsk art som fagfolk kan ha interesse av \u00e5 lese<\/span>.<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Instagram<\/span><\/i><\/b>: <\/span>https:\/\/www.instagram.com\/erdheim_chester\/?hl=en<\/span><\/a> <\/span><\/p>\n

*Dette er den <\/span>o<\/span>Den offisielle Instagram-siden til ECDGA. P\u00e5 grunn av Instagrams oppbygning er informasjonen begrenset<\/span>d<\/span>,<\/span> men det finnes lenker<\/span> p\u00e5 profilsiden v\u00e5r<\/span>. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

RareConnect<\/span><\/i><\/b>: <\/span>https:\/\/www.rareconnect.org\/en\/login?next=\/en\/community\/erdheim-chester-disease<\/span><\/a> <\/span><\/p>\n

*ECDGA har en <\/span>RareConnect<\/span> profile. This site is updated with the most recent information available including all current events, publications, studies and trials, <\/span>osv.<\/span>. Dette er perfekt for de som snakker et annet spr\u00e5k enn engelsk og som kanskje har vanskeligheter med \u00e5 forst\u00e5 noe av innholdet. Informasjonen p\u00e5 dette nettstedet vil bli oversatt til ditt morsm\u00e5l <\/span>by a human volunteer <\/span>for \u00e5 gj\u00f8re det tydeligere. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

 <\/span>Live p\u00e5 nettet <\/span><\/b>Chat:<\/span><\/b> <\/span><\/p>\n

 <\/span>Pasientst\u00f8tte<\/span><\/i><\/b> \u2013 <\/span>Chatzy<\/span>: <\/span>http:\/\/www.chatzy.com\/427437211406<\/span><\/a> <\/span><\/p>\n

*Denne chatten avholdes hver uke p\u00e5 l\u00f8rdag kl. 15.00 Eastern Standard Time. Selv om dette er det \u201cfaste\u201d tidspunktet, er chatterommet alltid \u00e5pent. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

St\u00f8tte til omsorgspersoner<\/span><\/i><\/b> <\/span>\u2013<\/span> <\/span> <\/span><\/p>\n

*E-post <\/span>support@erdheim-chester.org<\/span><\/a> for \u00e5 komme i kontakt med lederen for omsorgspersonteamet v\u00e5rt og motta en invitasjon til neste chat-sesjon for omsorgspersoner.<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Har du brukt noen av disse kommunikasjonsm\u00e5tene? Hvilken liker du best? <\/span>P\u00e5 hvilke andre m\u00e5ter \u00f8nsker du \u00e5 holde kontakten?<\/span> <\/span><\/h4>","protected":false},"excerpt":{"rendered":"

The intent behind our blog is to update our members with important information that can affect the daily lives of ECD patients and their families. We try to provide this information with the assistance […]<\/p>\n","protected":false},"author":14,"featured_media":8553,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[67,51],"tags":[83,80,81,84,77,56,82,52],"class_list":["post-8552","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","category-news","tag-blood-cancer","tag-caregiver","tag-communication","tag-corona-virus","tag-covid-19","tag-erdheim-chester","tag-rare-cancer","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/8552","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/comments?post=8552"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/posts\/8552\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media\/8553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/media?parent=8552"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/categories?post=8552"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/nb\/wp-json\/wp\/v2\/tags?post=8552"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}