A look back at the moments, milestones, and messages you may have missed. As 2025 comes to a close, we’re taking a moment to look back at a year that brought connection, education, progress, and support to the ECD community around the world. Whether you’ve been...
This is a final and important reminder that February 1, 2026 is the deadline for ALL submissions: registrations at the early bird rate, award nominations, patient posters, and financial assistance requests related to the 2026 ECD Global Alliance Patient & Family...
We are excited to announce that registration is now open for the 2026 ECD Global Alliance Patient & Family Gathering, taking place in Birmingham, Alabama! Early bird registration is available until February 1, 2026. We encourage you to register early to take...
Living with Erdheim-Chester Disease (ECD) can be overwhelming. As a rare and complex condition, ECD often leaves patients and caregivers feeling isolated, uncertain, and unsure where to turn. The ECD Global Alliance (ECDGA) support network exists to change that—by...
We are pleased to announce that registration is now open for the 2026 ECD Global Alliance Medical Symposium in Birmingham, Alabama. This important annual event brings together clinicians, researchers, and medical professionals dedicated to advancing the understanding...
The Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to announce the appointment of Jerome Henson as its new Executive Director. Jerome brings with him more than 30 years of leadership experience in education, having served as a teacher, principal, and...
