9th Annual ECD Patient & Family Gathering Seattle, WA
Seattle Patient & Family Gathering Group Picture 2024
Resumen de la reunión con pacientes y familiares
The 2024 Patient & Family Gathering (PFG) brought together 68 patients and family members from 3 countries. The patient/family community was joined by 42 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. Thirteen clinicians/scientists provided talks on ECD and ECD support needs. A Celebration Dinner with all attendees was enjoyed, allowing time for fellowship and recognition of community leaders who dedicate their time and recursos para apoyar a la comunidad de ECD. Consulta la información que figura a continuación para obtener más detalles sobre las actividades y presentaciones del PFG, así como las fotografías de la conferencia.
Programas con orden del día de la reunión
Presentación
| Presentador | Diapositivas de la presentación | English Video |
|---|---|---|
| Ken McClain, MD, PhD | Overview of ECD Basic Biology | Watch Video |
| Ronald S. Go, MD | Treating Erdheim-Chester Disease | Watch Video |
| Jacob Appelbaum, MD, PhD | Treatment Spotlight: CAR-T and Transplant Therapy | Watch Video |
| Eli Diamond, MD & Francesco Pegoraro, MD | How ECD Impacts the Body’s Organs | Watch Video |
| Kevin O’Brien, RN, MS-CRNP | Tackling Pain and Fatigue in Erdheim-Chester Disease | Watch Video |
| Blake Langley, ND | Understanding Integrative Medicine in Cancer Care | Watch Video |
| Juvianee I. Estrada-Veras, MD | How Far We Have Come: An Evolving Research Landscape | Watch Video |
| Dr. Gaurav Goyal | Why Research Matters | Watch Video |
| Paul C. Hendrie, MD, PhD (moderator) Dr. Eli Diamond Ronald Go, doctor en Medicina Jithma Abeykoon, MD | Question & Answers: Insights from ECD Medical Experts | Watch Video |
| Hanna Hunter, MD | Movement & ECD: How Physical Activity Builds Resilience | Watch Video |
| Aishwarya Ravindran, MD | Unpacking the Pathology Report Ravindran | Watch Video |
Historias de Pacientes
Fotografías
Fotos de la reunión
Fotos de la recepción y la cena
Fotos del encuentro con los fans
