Past Events

Annual Patient & Family Gathering History

Part of the ECD Global Alliance’s mission is to educate and support patients with the information they need to advocate for their health and quality of life.  The purpose of the Patient and Family Gathering (PFG) is to unite international patients and family members, as well as increase their knowledge and understanding of Erdheim-Chester Disease.

The PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical professionals who have experience in caring for ECD patients and who are doing research in the field.  The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options, as well as hear about the latest research findings.

Looking back at previous years’ videos and presentations will help you learn more about this event. Please find these listed below for your convenience and feel free to reach out with any questions.  (All ECDGA videos can also be found on our YouTube Channel.)