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 ressurser for å støtte ECD-miljøet. Se informasjonen nedenfor for mer om PFG-aktivitetene og presentasjonene, samt bilder fra konferansen.
Programmer med møteplan
Presentasjon
| Programleder | Presentation Title | Presentasjonsbilder | Presentasjon Videoer |
|---|---|---|---|
| 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 Om 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
