Den 11. årlige ECD-samlingen for pasienter og pårørende i Birmingham, AL
Birmingham Patient & Family Gathering Group Picture 2026
Sammendrag av pasient- og familiesamlingen
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.
Programmer med møteplan
Presentasjon
| Programleder | Presentation Title | Presentasjonsbilder | Presentation Videos |
|---|---|---|---|
| Gaurav Goyal, MD | Welcome to Birmingham & The ECD Patient and Family Gathering by the Host & Emcee | Vis lysbilde | Se video |
| Matthew Collin, MD, PhD | Manifestations of Histiocytosis in Adults | Vis lysbilde | Se video |
| Astrid van Halteren, dr. | Histiocytose på cellenivå | Vis lysbilde | Se video |
| Samuel B. Reynolds, MD | ECD/Histio Treatment Option | Vis lysbilde | Se video |
| Daniel Sokolowski, farmasøyt | Targeted Therapy: The Good, the Bad, and the Unaffordable | Vis lysbilde | Se video |
| Nicole Coufal, lege, dr. med. | Advancing Treatment for Histiocytic Neurodegeneration through Patient Specific Modeling | Vis lysbilde | Se video |
| Carrie Lenneman, lege, MSCI | What Should I Know About ECD Treatment and My Heart? Potential Cardiac Side Effects of ECD Treatment | Vis lysbilde | Se video |
| Eli Diamond, lege | ECD i hjernen | Vis lysbilde | Se video |
| Alexandra Dodd, lege | Endokrine symptomer ved Erdheim-Chester-syndromet | Vis lysbilde | Se video |
| Gaurav Goyal, MD; Julien Haroche, MD, PhD; Jithma Abeykoon, MD; Eli Diamond, MD | Expert Q & A Panel | n/a | Se video |
| Gaurav Goyal, MD; Jithma Abeykoon, MD; Eli Diamond, MD; Matthew Collin, MD | Expert Q & A Panel on Research | Vis lysbilde | Se video |
| Kevin O'Brien, sykepleier, MS-CRNP | General Medical Management for ECD | Vis lysbilde | Se video |
| Sylvia Huang, PhD, MA, MEd, FAAHPM | Følelsesmessige og kognitive endringer ved ECD | n/a | Se video |
| Richard Taylor, PhD, DNP, CRNP, APN-BC | Tretthet og smerter ved Erdheim-Chester-syndromet: Grunnleggende årsaker og praktiske strategier for energi, lindring og motstandskraft | Vis lysbilde | Se video |
| Elizabeth Bohorfoush, DPT | Bevegelse er medisin | Vis lysbilde | Se 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 | Se video |
Fotografier
Meet & Greet
Patient & Family Gathering
Festmiddag
Medisinsk symposium
