The ECD Global Alliance is excited to announce that registration is now open for the 2026 Patient & Family Gathering and Medical Symposium, to be held in Birmingham, Alabama. This important annual event brings together patients, caregivers, family members,...
This weekend, representatives from the Erdheim-Chester Disease Global Alliance (ECDGA) participated in the American Society of Hematology (ASH) Annual Conference in Orlando, Florida—one of the world’s leading gatherings for hematology professionals and rare disease...
For those living with Erdheim-Chester Disease, every day brings unknowns. But today, our community comes together to show that no one walks this journey alone. Your Giving Tuesday donation will be matched up to $90,000, doubling the love, support, and strength we can...
Last week, ECDGA President Diane Schriner and ECDGA Staff Member Jerome Henson represented the Erdheim-Chester Disease Global Alliance (ECDGA) at the American College of Rheumatology (ACR) Annual Conference, joined by Dr. Mitali Sen, a rheumatologist from the...
Living with Erdheim-Chester Disease—whether as a patient or caregiver—can bring overwhelming moments. Between doctor visits, uncertainty, and everyday life, it’s easy to feel the weight of it all. But you’re not alone. Here are a few gentle reminders and coping...
