往期活动

年度患者及家属联谊会历史

ECD全球联盟的使命之一，是向患者提供所需的信息，帮助他们维护自身健康和生活质量。患者及家属聚会（PFG）旨在凝聚来自世界各地的患者及其家属，并增进他们对埃尔德海姆-切斯特病的了解和认识。.

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 频道.)