Patient and Caregiver Stories

Patient and Caregiver Stories

Every ECD diagnosis has a story. Some stories begin with years of unanswered questions. Others are filled with resilience, courage, and hope. Today we honor every patient, every caregiver, and every family whose journey reminds us why awareness matters. We’d...
Caring for the Caregivers

Caring for the Caregivers

Caregivers give an extraordinary amount of themselves. They attend appointments, coordinate care, ask questions, provide encouragement, and help navigate difficult days. Their own needs can sometimes get overlooked. Supporting patients means supporting caregivers too....