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

Gary and the Erdheim-Chester Disease Global Alliance

by Kathy_Brewer published 7 months ago 2 comments

Gary was the retired Superintendent of Schools in Beauregard Parish in the State of Louisiana, was a retired Colonel in the US Air Force Reserves, ...

Simon's Story

by RareConnect team published 8 months ago 4 comments

I got my initial diagnosis of ECD in 2005. I had been having double vision and went to see the eye surgeon who had fixed the same problem a few yea...

Partners and Patient Groups

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