There is something powerful about talking with someone who simply gets it. ECDGA chats and webinars give patients and caregivers a place to share experiences, ask questions, exchange ideas, and connect with people who understand the journey. Connection creates...
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...
Progress Update Goal: $25,000 We still have work to do, but together we can get there. This week’s matching challenge means every donation has twice the impact. Make a gift, share your fundraiser, and help us spread the word. Every dollar matters. Every...
We want to feature YOU during the ECDGA 3rd Annual Fun Run, Walk or Roll! Send us photos of: Team members Walks, runs or Rolls Team gatherings Your photos may be featured on our social media pages throughout the event! Drop them in the comments or send them directly...
