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 researchers.
ECDGA Board President Diane Schriner and staff member Jerome Henson met with key medical experts deeply involved in advancing care for Erdheim-Chester disease, including:
- Ronald Go, MD, ECDGA Board Member
- Gaurav Goyal, MD, ECDGA Medical Advisory Board Member and host of the 2026 Patient & Family Gathering and Medical Symposium in Birmingham, Alabama
- Oshrat Hershkovitz-Rokah, PhD, member of the ECDGA Medical Advisory Board
Throughout the conference, the team engaged with clinicians, researchers, and industry partners to elevate awareness of ECD, discuss current challenges in diagnosis and treatment, and highlight the ongoing need for expanded research and clinical expertise.
“ASH provides an invaluable platform for education and collaboration,” said Schriner. “Every connection we make helps ensure that more physicians recognize ECD and more patients receive the timely and accurate care they deserve.”
The ECDGA remains committed to strengthening partnerships within the medical community, supporting innovative research, and empowering individuals and families affected by Erdheim-Chester disease.
We extend our gratitude to everyone who helped bring ECD awareness to the forefront at ASH 2025.