9th Annual ECD Patient & Family Gathering Seattle, WA
Seattle Patient & Family Gathering Group Picture 2024
Patient & Family Gathering Summary
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 resources to aid the ECD community. Please see the information below for more on the PFG activities and presentations, as well as pictures from the conference.
Programs with Gathering Agenda
Presentation
| Presenter | Presentation Slides | 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 |
| Gaurav Goyal, MD | Why Research Matters | Watch Video |
| Paul C. Hendrie, MD, PhD (moderator) Eli Diamond, MD Ronald Go, MD 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 |
Patient Stories
Photographs
Meeting Photos
Reception/Dinner Photos
Meet & Greet Photos
