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

HISTIOCYTOSIS-ERDHEIM-CHESTER DISEASE

by lucica published 8 days ago
7 comments

In 2001, I developed diabetes insipidus which I'm still keeping under control thanks to therapy with Minirin, in 2002 I had a sinovectomia on my le...

THE CANCER IN ME

by marinodan73 published 16 days ago
One comment

The cancer in Me
And my Orthopedic Doctor said; “YOU HAVE CANCER IN YOUR BONES – LEGS, ARMS AND POSSIBLY IN YOUR BRAINS AND ORGANS. I CANNO TREAT ...

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.