Eventos anteriores

Historia de la reunión anual de pacientes y familiares

Parte de la misión de la Alianza Global ECD consiste en informar y apoyar a los pacientes, proporcionándoles la información que necesitan para velar por su salud y su calidad de vida. El objetivo del Encuentro de Pacientes y Familiares (PFG) es reunir a pacientes y familiares de todo el mundo, así como ampliar sus conocimientos y su comprensión sobre la enfermedad de Erdheim-Chester.

The PFG provides attendees with a place to meet and an opportunity to direct questions and concerns to an international group of medical professionals who have experience in caring for ECD patients and who are doing research in the field.  The information that is shared can help lead a patient to quickly learn more about ECD and possible treatment options, as well as hear about the latest research findings.

Looking back at previous years’ videos and presentations will help you learn more about this event. Please find these listed below for your convenience and feel free to reach out with any questions.  (All ECDGA videos can also be found on our Canal de YouTube.)