by admin | Nov 5, 2025 | News
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...
by admin | Oct 29, 2025 | News
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...
by admin | Oct 28, 2025 | News
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...
by admin | Oct 27, 2025 | News
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...
by Steven May Jr | Sep 30, 2025 | News
This week, ECDGA President Diane Schriner, Board Member Paul Hendrie, MD, and team member Jerome Henson are proudly representing the Erdheim-Chester Disease Global Alliance at the 41st Annual Meeting of the Histiocyte Society! This international meeting brings...
by Steven May Jr | Sep 18, 2025 | News
https://www.erdheim-chester.org/wp-content/uploads/2025/09/Thank-You-ECD-video.mp4 Ziggy the Zebra, the beloved mascot of the Erdheim-Chester Disease Global Alliance (ECDGA), is here with a heartfelt message of gratitude. To our patients, families, friends, and...
