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

A diagnosis after 35 years of therapeutic wandering

by JFDeleplanque published 10 days ago
6 comments

The first signs of ECD appeared at the age of 13, with sudden weight gain. I doubled my weight within a year, then came the severe bone pain in my ...

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 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.