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.
Presentation
| Presenter | Presentation Slides | English Video |
|---|---|---|
| Ken McClain, MD, PhD | Overview of ECD Basic Biology | https://www.youtube.com/watch?v=zSp8GdKttBU&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=1&pp=iAQBsAgC |
| Ronald S. Go, MD | Treating Erdheim-Chester Disease | https://www.youtube.com/watch?v=WsT31DyawPs&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=2&pp=iAQBsAgC |
| Jacob Appelbaum, MD, PhD | Treatment Spotlight: CAR-T and Transplant Therapy | https://www.youtube.com/watch?v=IPuN5GfMPr4&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=3&t=3s&pp=iAQBsAgC |
| Eli Diamond, MD & Francesco Pegoraro, MD | How ECD Impacts the Body’s Organs | https://www.youtube.com/watch?v=hrL7fPT7c2M&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=4&pp=iAQBsAgC |
| Kevin O’Brien, RN, MS-CRNP | Tackling Pain and Fatigue in Erdheim-Chester Disease | https://www.youtube.com/watch?v=KTC3F4WX2-U&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=5&pp=iAQBsAgC |
| Blake Langley, ND | Understanding Integrative Medicine in Cancer Care | https://www.youtube.com/watch?v=rJ6znrLq-RQ&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=6&pp=iAQBsAgC |
| Juvianee I. Estrada-Veras, MD | How Far We Have Come: An Evolving Research Landscape | https://www.youtube.com/watch?v=ZexUFQ7KEgE&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=7&pp=iAQBsAgC |
| Gaurav Goyal, MD | Why Research Matters | https://www.youtube.com/watch?v=76GF6HGIkjw&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=8&t=4s&pp=iAQBsAgC |
| Paul C. Hendrie, MD, PhD (moderator) Eli Diamond, MD Ronald Go, MD Jithma Abeykoon, MD | Question & Answers: Insights from ECD Medical Experts | https://www.youtube.com/watch?v=NM5DCQDKp0Y&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=9&pp=iAQBsAgC |
| Hanna Hunter, MD | Movement & ECD: How Physical Activity Builds Resilience | https://www.youtube.com/watch?v=LUQSNH6kdYY&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=10&pp=iAQBsAgC |
| Aishwarya Ravindran, MD | 420 PM PFG Unpacking the Pathology Report Ravindran.pptx | https://www.youtube.com/watch?v=SZJkJMDHYKc&list=PLd9i5JBvapc4fpUGFnuLDiCJs0Vu46S_j&index=11&pp=iAQBsAgC |
Photographs
