One Family’s Search for Answers Became a Community

One Family’s Search for Answers Became a Community

Kathy Brewer finally learned the name of the disease that had made her husband, Gary, so ill. But the answer came after his death. For years, Gary’s health declined without a diagnosis, despite extensive evaluations at major medical centers. Only an autopsy revealed...
Our Global ECD Community

Our Global ECD Community

ECD may be rare, but no one has to face it alone. Across the world, patients, caregivers, physicians, researchers, volunteers, and advocates are working together to build a stronger future for everyone affected by ECD. Distance may separate us, but our community...
Research Brings Hope

Research Brings Hope

Today’s discoveries create tomorrow’s possibilities. Research has transformed what we know about ECD and continues to improve diagnosis, expand treatment options, and deepen our understanding of this rare disease. Every advance begins with curiosity,...