Progress in Erdheim-Chester Disease (ECD) doesn’t happen in isolation. It’s made possible through collaboration among scientists, clinicians, and the patients and families who push forward despite the unknowns. At the center of this progress stands the Medical...
In less than three months, the global Erdheim-Chester Disease (ECD) community will come together for the 10th Annual ECD Conference in Barcelona. This milestone event unites medical experts, researchers, patients, and families in a shared mission: to advance...
Raising awareness for a rare disease like Erdheim-Chester Disease (ECD) takes more than facts and figures—it takes people. It takes passion, imagination, and community spirit. And during Volunteer Month, we’re thrilled to recognize a very special kind of volunteer:...
When someone first hears the words Erdheim-Chester Disease (ECD), it can feel like stepping into unfamiliar territory—an ultra-rare diagnosis that most have never encountered. But from the very beginning, one thing the ECD community makes clear is this: you are not...
Hope in the Lab: MSK Research Sheds Light on ECD and the Brain A newly published study featured in the March 26, 2025, Memorial Sloan Kettering Cancer Center (MSK) Research Highlights offers important insight into how Erdheim-Chester Disease (ECD) and similar...
