by Asmaa Javed | May 6, 2025 | News
Why Early Diagnosis Matters in Erdheim-Chester Disease: Marc’s Story Being diagnosed with a rare disease like Erdheim-Chester Disease (ECD) can be overwhelming. For many, the path to finding answers is long, confusing, and often marked by years of uncertainty. But...
by Steven May Jr | May 3, 2025 | News
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...
by Asmaa Javed | Apr 29, 2025 | News
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:...
by Asmaa Javed | Apr 29, 2025 | News
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...
