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,...
Behind so much of what happens in the ECD community are people who simply decided to help. Volunteers contribute their time, talents, experience, and energy to support patients, increase awareness, and strengthen the ECD community. Every helping hand makes a...
No two experiences with ECD are exactly the same. Every patient and caregiver has a story. When those experiences are shared, they can educate others, create connections, and help someone else feel less alone. Your story matters. Take Action: Share something about...
Sometimes the most important thing you can hear is, “I can help.” The ECD Patient Navigator helps patients and families find information, understand available resources, connect with the ECD community, and identify appropriate next steps. You don’t have to...
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...
