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

Waiting to start treatment

by Jutty32 published 2 months ago 7 comments

This all started with eyelid swelling 2 years ago. I thought it was an allergy and did not think much of it. The swelling would occur infrequency...

It's a beautiful rainy day

by kelly70 published 3 months ago 12 comments

My story starts in 1997. I was diagnosed with cardiac sarcoidosis. It was a very rare disease at the time. I was told that I would die most likely ...

Partners and Patient Groups

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