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
published 13 days ago
Vemurafenib is but one treatment currently being used for ECD patients and it is the only known treatment being provided as part of a formal clinic...
published about 1 month ago
The first symptom was the diabetes insipidus and leg pain. During the early years, he remained stable with treatment for the diabetes. Since 2000, ...
Partners and Patient Groups
RareConnect is a joint venture of EURORDIS and NORD. The following patient groups are official partners of this community.