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


by RaquelContre published 6 months ago

necesitamos saber que hacer cual es el procedimiento después de su diagnostico, los médicos en Chile solo nos piden tiempo, ya que ellos desconocen...

A diagnosis after 35 years of therapeutic wandering

by JFDeleplanque published 7 months ago

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 ...

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.