Progress Update Goal: $25,000 We still have work to do, but together we can get there. This week’s matching challenge means every donation has twice the impact. Make a gift, share your fundraiser, and help us spread the word. Every dollar matters. Every...
We want to feature YOU during the ECDGA 3rd Annual Fun Run, Walk or Roll! Send us photos of: Team members Walks, runs or Rolls Team gatherings Your photos may be featured on our social media pages throughout the event! Drop them in the comments or send them directly...
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...
