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...
The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to announce that Dr. Gaurav Goyal of the University of Alabama at Birmingham (UAB) recently met with ECDGA Board President Diane Schriner to begin planning the 2026 ECDGA Patient & Family Gathering and...
A new study from Memorial Sloan Kettering Cancer Center highlights the promise of ulixertinib, a targeted therapy drug that blocks ERK, for treating certain forms of histiocytosis, including Erdheim-Chester Disease (ECD). Led by Dr. Eli Diamond, a member of the ECDGA...
Left to right: Diane Schriner (ECDGA), Dr. Ronald Go (Mayo Clinic, Rochester), and Jerome Henson (ECDGA) discuss care strategies and research priorities. Dr. Go is a valued member of the ECDGA Medical Advisory Board.
