11e jaarlijkse ECD-bijeenkomst voor patiënten en familieleden in Birmingham, AL
Birmingham Patient & Family Gathering Group Picture 2026
Samenvatting van de bijeenkomst voor patiënten en familieleden
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.
Programma's met een bijeenkomstagenda
Presentatie
| Presentator | Presentation Title | Presentatiedia’s | Presentatievideo's |
|---|---|---|---|
| Gaurav Goyal, arts | Welcome to Birmingham & The ECD Patient and Family Gathering by the Host & Emcee | Dia bekijken | Bekijk de video |
| Matthew Collin, arts, dr. | Manifestations of Histiocytosis in Adults | Dia bekijken | Bekijk de video |
| Astrid van Halteren, dr. | Histiocytose op cellulair niveau | Dia bekijken | Bekijk de video |
| Samuel B. Reynolds, MD | ECD/Histio Treatment Option | Dia bekijken | Bekijk de video |
| Daniel Sokolowski, PharmD | Targeted Therapy: The Good, the Bad, and the Unaffordable | Dia bekijken | Bekijk de video |
| Nicole Coufal, arts, doctor in de geneeskunde | Advancing Treatment for Histiocytic Neurodegeneration through Patient Specific Modeling | Dia bekijken | Bekijk de video |
| Carrie Lenneman, arts, MSCI | What Should I Know About ECD Treatment and My Heart? Potential Cardiac Side Effects of ECD Treatment | Dia bekijken | Bekijk de video |
| Eli Diamond, arts | ECD in de schijnwerpers | Dia bekijken | Bekijk de video |
| Alexandra Dodd, arts | Endocriene verschijnselen van de ziekte van Erdheim-Chester | Dia bekijken | Bekijk de video |
| Gaurav Goyal, MD; Julien Haroche, MD, PhD; Jithma Abeykoon, MD; Eli Diamond, MD | Expert Q & A Panel | n.v.t. | Bekijk de video |
| Gaurav Goyal, MD; Jithma Abeykoon, MD; Eli Diamond, MD; Matthew Collin, MD | Expert Q & A Panel on Research | Dia bekijken | Bekijk de video |
| Kevin O'Brien, gediplomeerd verpleegkundige, MS-CRNP | General Medical Management for ECD | Dia bekijken | Bekijk de video |
| Sylvia Huang, PhD, MA, MEd, FAAHPM | Emotionele en cognitieve veranderingen bij ECD | n.v.t. | Bekijk de video |
| Richard Taylor, PhD, DNP, CRNP, APN-BC | Vermoeidheid en pijn bij de ziekte van Erdheim-Chester: onderliggende oorzaken en praktische strategieën voor meer energie, verlichting en veerkracht | Dia bekijken | Bekijk de video |
| Elizabeth Bohorfoush, DPT | Beweging is medicijn | Dia bekijken | Bekijk de 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.v.t. | Bekijk de video |
Foto's
Meet & Greet
Patient & Family Gathering
Celebration Dinner
Medisch symposium
