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

Newly diagnosed

by staceybork published 20 days ago
One comment

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...

One year without knowing!

by Patricia45 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.