Welcome - Erdheim-Chester Disease (ECD) Community
What is Erdheim-Chester Disease (ECD) ?
Erdheim-Chester Disease is an ultra rare non-Langerhans' cell histiocytosis that can affect many different organs of the body. ECD is not currently classified, i.e., it is not yet known whether ECD is a cancer, autoimmune disorder, storage disorder, infectious disease, etc.
Source: ECD Global Alliance
Erdheim-Chester Disease (ECD) Resources
More members stories
Latest Member Stories
published 20 days ago
I have recently been diagnosed with ECD I think by Mayo in Rochester. However, I do not know at what point it is actually “confirmed”. I had a bo...
published about 1 month ago
I think this is the beginning of my disease, at least I’ve been taking Acupan since December 2014. It helps me to forget the severe pains localized...
Partners and Patient Groups
RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.