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 beautiful rainy day

by kelly70 published about 1 month 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 ...

Freshly 'diagnosed' ECD

by Michiel published 2 months ago
4 comments

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!
...

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.