{"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":"community-connections-during-covid-19","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/de\/community-connections-during-covid-19\/","title":{"rendered":"Gemeinschaftliche Verbindungen w\u00e4hrend der COVID-19-Pandemie"},"content":{"rendered":"

The intent behind our blog is to update <\/span>our members <\/span>with important information that can <\/span>aff<\/span>ect the daily lives of ECD patients<\/span> and their families<\/span>. We try to provide this information with the assistance a<\/span>nd<\/span> guidance of our <\/span>trusted <\/span>medical professionals. <\/span>Due<\/span> to the increase in COVID-19 cases worldwide and the need for all our medical professionals to be on the front<\/span> <\/span>lines, our blog posts will be limited to the abilities and knowledge of the ECDGA team. <\/span> <\/span><\/p>\n

 <\/span>This week while everyone is practicing social distancing<\/span>,<\/span> we get a bit more in<\/span>–<\/span>depth about the importance of not getting <\/span>disconnected from one another virtually<\/span>. <\/span> <\/span><\/p>\n

 <\/span>Admitting to yourself about your diagnosis can be very difficult. It can be even harder <\/span>to speak about it to family, friends, and co-workers. <\/span> <\/span>The ECD Global Alliance is here to provide support, information, and to advocate on your behalf<\/span>, which can make those conversations a bit easier<\/span>.<\/span> <\/span><\/p>\n

 <\/span>While your disease may be rare, know that you are not alone! The ECDGA has many options that can allow patients, families, and caregivers the ability to meet, communicate, and find hope. These other families will become friends, allies, a support network, and even a place to vent when you have had a bad day. We encourage you to share the <\/span>big and <\/span>little victories <\/span>with each other!<\/span> <\/span> <\/span><\/p>\n

 <\/span>Ways to communicate with the ECD Global Alliance<\/span> family…<\/span> <\/span><\/p>\n

 <\/span>ECDGA Team <\/span><\/b>E-Mail<\/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

Local Networking<\/span><\/b>:<\/span><\/b> <\/span><\/p>\n

 <\/span>The ECD Global Alliance <\/span>can <\/span>provide <\/span>patients and caregivers with <\/span>contact information for those in your loc<\/span>al area t<\/span>hat have agreed to have their information shared with other members. Email Chesnee or Jessica for more information (see email addresse<\/span>s above).<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Soziale Medien<\/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 Group<\/span><\/i><\/b>: <\/span>https:\/\/www.facebook.com\/groups\/784637751599933\/<\/span><\/a> <\/span><\/p>\n

 <\/span>*This is the ECDGA\u2019s private group<\/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

*This is the<\/span> official<\/span> ECDGA YouTube <\/span>channel<\/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

*Our LinkedIn <\/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>all things medical pros may be interested in reading<\/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

*This is the <\/span>o<\/span>fficial Instagram page for the ECDGA. Due to the nature of Instagram, information is limite<\/span>d<\/span>,<\/span> but links are available<\/span> in our profile page<\/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

*The ECDGA has a <\/span>RareConnect<\/span> profile. This site is updated with the most recent information available including all current events, publications, studies and trials, <\/span>etc<\/span>. It is great for those that speak a language other than English that may struggle to understand some material. Information provided on this site will be translated into your native language <\/span>by a human volunteer <\/span>for clarity. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

 <\/span>Online Live <\/span><\/b>Chat:<\/span><\/b> <\/span><\/p>\n

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

*This Chat is held weekly on Saturday at 3PM Eastern Standard Time. Although that is the \u201cset\u201d time, the chatroom is always open. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Caregiver Support<\/span><\/i><\/b> <\/span>\u2013<\/span> <\/span> <\/span><\/p>\n

*Email <\/span>support@erdheim-chester.org<\/span><\/a> to be connected with our caregiver team leader and receive an invite to the next caregiver chat session.<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Have you used any of these ways of communication? What is your favorite? <\/span>What other ways would you like to connect?<\/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\/de\/wp-json\/wp\/v2\/posts\/8552","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/users\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/comments?post=8552"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/posts\/8552\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media\/8553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/media?parent=8552"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/categories?post=8552"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/de\/wp-json\/wp\/v2\/tags?post=8552"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}