11th Annual ECD Patient & Family Gathering Birmingham, AL
Birmingham Patient & Family Gathering Group Picture 2026
Patient & Family Gathering Summary
The 2026 Patient & Family Gathering (PFG) brought together 51 patients and family members from 3 countries. The patient/family community was joined by 44 clinicians and scientists who are passionate about caring for patients and learning more about Erdheim-Chester Disease. 12 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 Title | Presentation Slides | Presentation Videos |
|---|---|---|---|
| Gaurav Goyal, MD | Welcome to Birmingham & The ECD Patient and Family Gathering by the Host & Emcee | View Slide | Watch Video |
| Matthew Collin, MD, PhD | Manifestations of Histiocytosis in Adults | View Slide | Watch Video |
| Astrid van Halteren, PhD | Histiocytosis at the Cellular Level | View Slide | Watch Video |
| Samuel B. Reynolds, MD | ECD/Histio Treatment Option | View Slide | Watch Video |
| Daniel Sokolowski, PharmD | Targeted Therapy: The Good, the Bad, and the Unaffordable | View Slide | Watch Video |
| Nicole Coufal, MD, PhD | Advancing Treatment for Histiocytic Neurodegeneration through Patient Specific Modeling | View Slide | Watch Video |
| Carrie Lenneman, MD, MSCI | What Should I Know About ECD Treatment and My Heart? Potential Cardiac Side Effects of ECD Treatment | View Slide | Watch Video |
| Eli Diamond, MD | ECD on the Brain | View Slide | Watch Video |
| Alexandra Dodd, MD | Endocrine Manifestations of Erdheim-Chester Disease | View Slide | Watch Video |
| Gaurav Goyal, MD; Julien Haroche, MD, PhD; Jithma Abeykoon, MD; Eli Diamond, MD | Expert Q & A Panel | n/a | Watch Video |
| Gaurav Goyal, MD; Jithma Abeykoon, MD; Eli Diamond, MD; Matthew Collin, MD | Expert Q & A Panel on Research | View Slide | Watch Video |
| Kevin O'Brien, RN, MS-CRNP | General Medical Management for ECD | View Slide | Watch Video |
| Sylvia Huang, PhD, MA, MEd, FAAHPM | Emotional and Cognitive Changes in ECD | n/a | Watch Video |
| Richard Taylor, PhD, DNP, CRNP, APN-BC | Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy, Relief, and Resilience | View Slide | Watch Video |
| Elizabeth Bohorfoush, DPT | Movement is Medicine | View Slide | Watch Video |
| Kevin O'Brien, RN, MS-CRNP; Sylvia Huang, PhD, MA, MEd, FAAHPM; Richard Taylor, PhD, DNP, APN-BC; Elizabeth Bohorfoush, DPTCRNP, | Expert Q & A Panel on Supportive Care | n/a | Watch Video |
Photographs
Meet & Greet
Patient & Family Gathering
Celebration Dinner
Medical Symposium
