11º Encontro Anual de Pacientes e Familiares da ECD, em Birmingham, AL
Birmingham Patient & Family Gathering Group Picture 2026
Resumo do Encontro com Pacientes e Familiares
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.
Programas com agenda do encontro
Apresentação
| Apresentador | Presentation Title | Slides da apresentação | Presentation Videos |
|---|---|---|---|
| Dr. Gaurav Goyal | Welcome to Birmingham & The ECD Patient and Family Gathering by the Host & Emcee | Ver slide | Assista ao vídeo |
| Matthew Collin, médico, PhD | Manifestations of Histiocytosis in Adults | Ver slide | Assista ao vídeo |
| Astrid van Halteren, Ph.D. | A histiocitose no nível celular | Ver slide | Assista ao vídeo |
| Samuel B. Reynolds, MD | ECD/Histio Treatment Option | Ver slide | Assista ao vídeo |
| Daniel Sokolowski, Doutor em Farmácia | Targeted Therapy: The Good, the Bad, and the Unaffordable | Ver slide | Assista ao vídeo |
| Dra. Nicole Coufal, MD, PhD | Advancing Treatment for Histiocytic Neurodegeneration through Patient Specific Modeling | Ver slide | Assista ao vídeo |
| Carrie Lenneman, médica, mestre em Ciências da Informação Clínica | What Should I Know About ECD Treatment and My Heart? Potential Cardiac Side Effects of ECD Treatment | Ver slide | Assista ao vídeo |
| Dr. Eli Diamond | ECD no cérebro | Ver slide | Assista ao vídeo |
| Dra. Alexandra Dodd | Manifestações endócrinas da doença de Erdheim-Chester | Ver slide | Assista ao vídeo |
| Gaurav Goyal, MD; Julien Haroche, MD, PhD; Jithma Abeykoon, MD; Eli Diamond, MD | Expert Q & A Panel | n/a | Assista ao vídeo |
| Gaurav Goyal, MD; Jithma Abeykoon, MD; Eli Diamond, MD; Matthew Collin, MD | Expert Q & A Panel on Research | Ver slide | Assista ao vídeo |
| Kevin O'Brien, enfermeiro registrado, mestre em Ciências com especialização em Enfermagem de Prática Avançada (MS-CRNP) | General Medical Management for ECD | Ver slide | Assista ao vídeo |
| Sylvia Huang, PhD, MA, MEd, FAAHPM | Alterações emocionais e cognitivas no ECD | n/a | Assista ao vídeo |
| Richard Taylor, PhD, DNP, CRNP, APN-BC | Fadiga e dor na doença de Erdheim-Chester: causas fundamentais e estratégias práticas para aumentar a energia, obter alívio e desenvolver resiliência | Ver slide | Assista ao vídeo |
| Elizabeth Bohorfoush, DPT | O movimento é remédio | Ver slide | Assista ao vídeo |
| 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 | Assista ao vídeo |
Fotografias
Meet & Greet
Patient & Family Gathering
Jantar Comemorativo
Simpósio Médico
