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

It's a long road

by joeinaz published about 1 month ago 3 comments

The painful legs started around 4 years ago but became significant in late 2012. It had reached the point of ice packs on my legs at early evening ...


by philwarren published about 1 month ago 2 comments

I have had ECD for... Who knows? I was diagnosed with CDI in 2006, but think I can trace it back to 2000 at least.

In late 2011, I was short of...

Partners and Patient Groups

RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.