Hi! I’m Ziggy, your ECD Awareness Guide. Throughout September, I’ll be sharing facts, answering common questions, introducing inspiring members of our community, and helping make Erdheim-Chester Disease easier to understand. Let’s learn...
During ECD Awareness Month, we’ve talked about research, expert care, patients, caregivers, families, volunteers, advocacy, and the people working every day to create progress. But awareness shouldn’t end when the month does. Every person who learns,...
Rare diseases need people willing to speak up. Every conversation about ECD can increase awareness and help patients, families, healthcare professionals, and communities better understand this ultra-rare disease. You don’t have to be an expert to be an advocate....
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....
ECD affects more than the person who receives the diagnosis. Families become appointment companions, researchers, organizers, advocates, listeners, and sources of strength while navigating their own questions and uncertainty. Sometimes family includes friends,...
