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Caring for Yourself During the Holidays: Support for ECD Patients and Families

Caring for Yourself During the Holidays: Support for ECD Patients and Families

by admin | Dec 16, 2025 | News

The holiday season is often filled with celebration, connection, and meaningful traditions. But for individuals living with Erdheim-Chester disease (ECD), this time of year can also bring unique challenges—fatigue, stress, disrupted routines, medical appointments,...
ECDGA Leadership Shares ECD Awareness at ASH Conference in Orlando, FL

ECDGA Leadership Shares ECD Awareness at ASH Conference in Orlando, FL

by admin | Dec 9, 2025 | News

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...
Dr. Gaurav Goyal and ECDGA Board President Diane Schriner Collaborate on Plans for 2026 Patient & Family Gathering and Medical Symposium

Dr. Gaurav Goyal and ECDGA Board President Diane Schriner Collaborate on Plans for 2026 Patient & Family Gathering and Medical Symposium

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...
Insight from the ECDGA Medical Advisory Board!

Insight from the ECDGA Medical Advisory Board!

by Steven May Jr | Oct 1, 2025 | Social Posts

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.
International Collaboration in Action!

International Collaboration in Action!

by Steven May Jr | Oct 1, 2025 | Social Posts

Left to eight: Jerome Henson (ECDGA), Diane Schriner (ECDGA), Francesco Pegoraro, MD (Meyer Children’s University Hospital, Italy). Cross-border partnerships are essential in advancing the understanding of Erdheim-Chester Disease.
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