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...
As we move into the final weeks of summer, the Erdheim-Chester Disease Global Alliance (ECDGA) is preparing for one of the most impactful moments of the year—Erdheim-Chester Disease Awareness Week, observed globally from September 8 through 13. This dedicated week is...
The ECD Global Alliance (ECDGA) is proud to announce the release of the complete video recordings from the 2025 Annual Patient & Family Gathering in Barcelona. If you were unable to attend in person or would like to revisit the incredible insights shared by global...
Please join me in welcoming Diane Schriner as the new ECD Global Alliance President. Diane has been an integral part of the ECDGA Board of Directors since 2018 and has served as Vice President since 2021. During that time, she has exemplified extraordinary compassion,...
Time is ticking. The ECDGA Get Ready to Run, Walk & Roll for Hope Fun Run ends on July 15, and we are so close to our goal. With $20,999.62 raised, we are just a few steps away from reaching our $25,000 target—but we need your help to get there. Every registration...
