ECD Awareness Week is September 8–14, 2025, and we need YOU to help raise awareness and show the world what it means to be part of the ECD family. Awareness Week is important because Erdheim-Chester Disease (ECD) is so rare that many people— even in the medical...
Erdheim-Chester Disease, also called ECD, is a very rare kind of blood cancer. It is so rare that some medical articles estimate that only about 2,000 cases around the world have been documented. Our bodies have special cells called histiocytes. Normally, these cells...
https://www.erdheim-chester.org/wp-content/uploads/2025/08/A_realistic_cinematic_202508181055_yfmfz-1.mp4 The Erdheim-Chester Disease Global Alliance (ECDGA) is excited to introduce our newest team member—Ziggy the Zebra! Ziggy isn’t your average zebra. Ziggy...
The Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to announce the 2025 Call for Letters of Intent (LOIs) for research projects focused on Erdheim-Chester Disease (ECD) and related adult histiocytic disorders. This annual funding opportunity aims to...
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,...
