Ziggy Knows… People with ECD spend years searching for answers. Research has shown that after symptoms first appear, it takes an average of 4.2 years to get an ECD diagnosis. Learning about ECD can help shorten that journey for future patients. Earlier...
Rare diseases need people willing to speak up. Every conversation about ECD can increase awareness and help patients, families, healthcare professionals, and communities better understand this ultra-rare disease. You don’t have to be an expert to be an advocate....
The ECD Global Alliance is excited to announce that our 3rd Annual Fun Run will take place from June 1–30, 2026! Registration is officially open, and we invite patients, caregivers, families, friends, and supporters from around the world to join us for this special...
Last week, ECDGA President Diane Schriner and ECDGA Staff Member Jerome Henson represented the Erdheim-Chester Disease Global Alliance (ECDGA) at the American College of Rheumatology (ACR) Annual Conference, joined by Dr. Mitali Sen, a rheumatologist from the...
https://www.erdheim-chester.org/wp-content/uploads/2025/09/Ziggy-Spreads-a-Heartfelt-Message-of-Gratitude-video.mp4 Ziggy the Zebra, the beloved mascot of the Erdheim-Chester Disease Global Alliance (ECDGA), is here with a heartfelt message of gratitude. To our...
