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,...
Πίσω από πολλά από όσα συμβαίνουν στην κοινότητα του ECD βρίσκονται άνθρωποι που απλώς αποφάσισαν να προσφέρουν τη βοήθειά τους. Οι εθελοντές προσφέρουν το χρόνο, τα ταλέντα, την εμπειρία και την ενέργειά τους για να στηρίξουν τους ασθενείς, να ευαισθητοποιήσουν το κοινό και να ενισχύσουν την κοινότητα του ECD. Κάθε χέρι βοήθειας κάνει τη διαφορά...
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...
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...
