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

Freshly 'diagnosed' ECD

by Michiel published about 1 month ago

Hi there

I’m a 37 year old man from Amsterdam in The Netherlands.
Since 2003 I have my sisters kidney cleaning my blood and it’s doing great!

Testimony about my mother who suffers from Erdheim-Chester disease

by Maurine published about 1 month ago
No comment

My mother who is now 76 years old lives in a french island in the Caribbean, The Martinique, and I, live in the sister island, The Guadeloupe. Four...

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.