rare connect
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 and guidance of our trusted medical professionals. Due to the increase in COVID-19 cases worldwide and the need for all our medical professionals to be on the front lines, our blog posts will be limited to the abilities and knowledge of the ECDGA team.
This week while everyone is practicing social distancing, we get a bit more in–depth about the importance of not getting disconnected from one another virtually.
Admitting to yourself about your diagnosis can be very difficult. It can be even harder to speak about it to family, friends, and co-workers. The ECD Global Alliance is here to provide support, information, and to advocate on your behalf, which can make those conversations a bit easier.
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 big and little victories with each other!
Ways to communicate with the ECD Global Alliance family…
ECDGA Team Emails:
Jessica.Corkran@erdheim-chester.org
Chesnee.Green@erdheim-chester.org
Local Networking:
The ECD Global Alliance can provide patients and caregivers with contact information for those in your local area that have agreed to have their information shared with other members. Email Chesnee or Jessica for more information (see email addresses above).
Social Media:
Facebook: https://www.facebook.com/ErdheimChesterDisease
*This is the ECDGA’s Facebook page that is updated with the most recent information available including all current events, publications, studies and trials, and so much more.
Facebook Group: https://www.facebook.com/groups/784637751599933/
*This is the ECDGA’s private group. 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.
Twitter: https://twitter.com/ECDGA
*This is the ECDGA’s Twitter page that is updated with the most recent information available including all current events, publications, studies and trials, and so much more.
YouTube: https://www.youtube.com/channel/UCYR3skRhqAFWC5PTOGv34JQ
*This is the official ECDGA YouTube channel. 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).
LinkedIn: https://www.linkedin.com/company/erdheim-chester-disease-global-alliance-npo
*Our LinkedIn account is our professional profile that is also updated with the most recent information available including all current events, publications, studies and trials, and all things medical pros may be interested in reading.
Instagram: https://www.instagram.com/erdheim_chester/?hl=en
*This is the official Instagram page for the ECDGA. Due to the nature of Instagram, information is limited, but links are available in our profile page.
RareConnect: https://www.rareconnect.org/en/login?next=/en/community/erdheim-chester-disease
*The ECDGA has a RareConnect profile. This site is updated with the most recent information available including all current events, publications, studies and trials, etc. 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 by a human volunteer for clarity.
Online Live Chat:
Patient Support – Chatzy: http://www.chatzy.com/427437211406
*This Chat is held weekly on Saturday at 3PM Eastern Standard Time. Although that is the “set” time, the chatroom is always open.
Caregiver Support –
*Email support@erdheim-chester.org to be connected with our caregiver team leader and receive an invite to the next caregiver chat session.
