Ziggy Knows… Erdheim-Chester Disease (ECD) is an ultra-rare blood cancer that can affect many different parts of the body, including the bones, heart, brain, kidneys, lungs, skin, eyes, and other organs. Because it can look different from person to person, ECD...
ECD Awareness Month is here! In this special message, ECD Global Alliance Board President Diane Schriner shares how learning, connecting, and raising awareness can make a meaningful difference for everyone affected by Erdheim-Chester disease. Watch, share, and help us...
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...
ECDGA Community, This week marks the beginning of ECD Awareness Month, and we’re starting with one of the most important steps we can take together: helping more people understand Erdheim-Chester Disease. You can’t recognize what you’ve never heard of. For many people...
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....
An ECD diagnosis can feel overwhelming, especially when the disease is something most people have never heard of. But no one has to navigate ECD alone. Around the world, patients and families are connected by a community that understands, listens, shares, and supports...
