Left to right: Jerome Henson (ECDGA), Fernando Gotz (OR Association), Diane Schriner (ECDGA), Claudio Di Girolama(HA – Canada), discussing the poster, “Global Histio: The international Patient Advocacy Group Coalition for Collaboration in Histiocytosis.” This project...
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...
Presented by Dr. Gaurav Goyal, University of Alabama at Birmingham In partnership with the Erdheim-Chester Disease Global Alliance (ECDGA) This presentation explores the importance of survivorship research in Erdheim-Chester Disease (ECD) and the critical role...
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...
