Canada Monthly Chat – Featuring Guest Speaker Gary Tobin

Canada Monthly Chat – Featuring Guest Speaker Gary Tobin

The July 31 Canada Monthly Chat was a truly special event, featuring guest speaker Gary Tobin, who shared his extraordinary journey of resilience and survival after being diagnosed with stage 4 Acral Lentiginous Melanoma. This session was recorded so the broader...
ECD Awareness Week 2025 is September 8–14

ECD Awareness Week 2025 is September 8–14

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...
What Is Erdheim-Chester Disease? A Simple Explanation

What Is Erdheim-Chester Disease? A Simple Explanation

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...
Meet Ziggy the Zebra: Our New Mascot with a Big Mission!

Meet Ziggy the Zebra: Our New Mascot with a Big Mission!

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...