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

A long story

by Dan13 published 24 days ago
One comment

Cardiovascular non-Langerhans cell histiocytosis (Erdheim Chester disease) diagnosed in November 2009. Several arteries of the trunk involved.
As...

Newly diagnosed

by staceybork published 5 months 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...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.