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...
As we close another week of ECD Awareness Month, we celebrate everyone who makes progress possible. Thank you to the physicians searching for answers, the researchers making discoveries, the patients and families who participate in research, and every supporter who...
Les progrès sont le fruit d'une collaboration entre tous. Les patients, les soignants, les médecins, les chercheurs, les bénévoles, les associations de défense des droits, les sympathisants et l'ECDGA jouent tous un rôle important dans l'avancement de la recherche sur l'ECD. Découvrez cette collaboration en action et explorez...
