| Time | Allocated minutes (510 min total) | Presentation Subject Possibilities (Actual Titles to be Provided by Presenters) | Presenter | Session Description |
|---|---|---|---|---|
| 8 | 30 | One? | N/A | |
| 8:30 | 15 | Welcome to Birmingham & PFG Meeting | Gaurav Goyal, MD | Welcome to the 11th Annual Erdheim-Chester Disease International Conference!? Introductions to Birmingham, UAB and the ECD Global Alliance. |
| 8:45 | 15 | Manifestations of histiocytosis in adults | Matthew Collin, MD, PhD | Learn about the difference types of adult histiocytic disorders. How are they different? How are they the same?? What have we learned recently that makes us believe they are more alike than they once were. |
| 9:00 | 15 | Histiocytosis at the Cellular Level | Astrid van Halteren, PhD | This presentation will zoom into the different cell types which can be found in the bone marrow, blood and tissues of patients diagnosed with histiocytosis |
| 9:15 | 15 | ECD/Histio Treatment Options | Sam Reynolds, MD | ECD/Histio Treatment Options (Current & on the horizon) |
| 9:30 | 15 | Tagreted Therapy: The Good, the Bad, and the Unaffordable | Daniel Sokolowski, PharmD | Overview of targeted treatments for histiocytosis and management of their adverse effects. |
| 9:45 | 20 | Break | N/A | |
| 10:05 | 15 | Advancing treatment for histiocytic neurodegeneration through patient specific modeling | Nicole Coufal, MD, PhD | The importance of patient samples to the science, and the importance of pilot funding and where we hope to take it in the future. |
| 10:20 | 15 | What should I know about ECD Treatment and My Heart?? Potential cardiac side effects of ECD treatment. | Carrie Lenneman, MD, MSCI | Discuss common medication used in treatment of ECD . Review potential cardiac side effects and management strategies of ECD treatment.? |
| 10:35 | 15 | ECD on the Brain | Eli Diamond, MD | Discussion of ECD effects on the brain. |
| 10:50 | 15 | Endocrine Manifestations of Erdheim-Chester Disease | Alexandra Dodd, MD | Understand endocrine manifestations of ECD including effects on the pituitary gland. Understand the treatments for endocrine disorders related to ECD. |
| 11:05 | 40 | Expert Q&A? | Julien Haroche, MD, PhD Eli Diamond, MD Ronald Go, MD Gaurav Goyal, MD (Moderator) | Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.?? |
| 11:45 | 15 | Pictures | N/A | |
| 12:00 ? 1:00pm | 60 | Lunch | N/A | |
| 1:00 | 20 | Research Opportunities (Panel Discussion - 5 min each) | Eli Diamond, MD (Registry) Gaurav Goyal, MD (Survivorship) Jithma Abeykoon, MD (CSF1R, ERK) Matthew Collins, MD, PhD | Hear the answers from ECD Medical experts about the open research opportunities.? Hear up-to-date answers from those who are doing ECD research.?? |
| 1:20 | 20 | Expert Question & Answer Panel | Gaurav Goyal, MD Eli Diamond, MD Jithme Abeykoon, MD Matthew Collins, MD, PhD | Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.? Don?t be shy, ask your questions about ECD in general! [Please note, the panel is unable to provide any personal medical advise during this session.] |
| 1:40 | 60 | Breakout Sessions | Kevin O'Brien, RN, MS-CRNP (patients) Sylvia Huang, PhD, MA, MEd, FAAHPM (Caregivers) | Breakout Session: - Patients: Personal Challenges in Living with Erdheim-Chester Disease - Cargivers & Family:? Addressing YOUR Emotional Needs |
| 2:40 | 20 | Break | N/A | |
| 3:00 | 15 | General medical management for ECD | Kevin O'Brien, RN, MS-CRNP | Highlighting the importance of managing ongoing general medical problems.? For example, hypertension, diabetes, weight, cholesterol levels, etc.? These uncontrolled medical problems can compound overall disease burden.?? |
| 3:15 | 15 | Emotional and Cognitive Changes in ECD | Sylvia Huang, PhD, MA, MEd, FAAHPM | Living with Erdheim-Chester Disease can bring emotional, cognitive, and fatigue-related changes that are real and often invisible. This session offers understanding, reassurance, and practical guidance to help patients and families make sense of these experiences. Participants will learn about supportive strategies and resources that promote resilience, wellbeing, and hope. |
| 3:30 | 15 | Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy, Relief, and Resilience | Richard Taylor, PhD, DNP, CRNP, APN-BC | This session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD). The goal is to offer meaningful, evidence-informed tools to reduce suffering, build resilience, and improve energy, mobility, and quality of life. |
| 3:45 | 15 | Movement is Medicine | Elizabeth Bohorfoush, DPT | Patients and caregivers receive guidance through gentle, low-level exercises to help reduce pain, build strength, improve posture, and encourage activity.?? |
| 4:00 | 20 | Expert Question & Answer Panel | Kevin O'Brien, RN, MS-CRNP Sylvia Huang, PhD, MA, MEd, FAAHPM Richard Taylor, PhD, DNP, CRNP, APN-BC Elizabeth Bohorfoush, DPT | Ask your questions and hear the answers from the experts. Don?t be shy, ask your questions! [Please note, the panel is unable to provide any personal medical advise during this session.] |
| 4:20 | 10 | ECDGA Close | Jerome Henson, ED (ECDGA) | Learn more about the ECD Global Alliance.? Hear why the organization was created and what has been accomplished as a result.? Learn how the organization is able to do its work and how you can become more involved in improving the lives of all who have been impacted by Erdheim-Chester Disease. |
| 510 | ||||
| 510 |
| Time | Subject | Presenter |
|---|---|---|
| 8:00 am | Registration & light breakfast | |
| 8:30 am | Welcome to Birmingham and the 11th Annual Erdheim-Chester Disease International Conference | Gaurav Goyal University of Alabama at Birmingham, Birmingham, AL USA |
| Keynote Address | ||
| 8:45 am | Diversity and Degeneration in Neurohistiocytic Disease | Nicole Coufal University of California, San Diego USA |
| 9:25 am | Break | |
| Morning Abstract Presentations Session 1: Cells, Clones & Circuits: Where Histiocytosis Begins (and Persists) | ||
| 9:35 am | ARAF Mutations Drive Histiocytic Neoplasms In Vivo and Provide Insights into Cellular Origin | Benjamin Durham Rutgers Cancer Institute, Robert Wood Johnson School of Medicine, Brunswick, NJ |
| 9:50 am | Tracking BRAF V600E Persistence under MEK Inhibition in Histiocytoses: a Bcell–enriched signal | Julien Haroche Department of Internal Medicine & E3M Institute, Pitié-Salpêtrière Hospital, AP-HP – Sorbonne University, Paris, France |
| 10:05 am | Distribution of MAP2K1 Variants Across Peripheral Blood Cells in ErdheimChester Disease and Other Histiocytoses | Irena Ungureanu AmbroiseParé Hospital, Pathology Department, BoulogneBillancourt, France |
| 10:20 am | The Clonal Origin and Evolution of HighRisk Multisystem Histiocytosis in Adults | Matthew Collin Newcastle University, United Kingdom |
| 10:35 am | Networking Break | |
| Morning Abstract Presentations Session 2: Genotype → Therapy: Biomarkers, Responses, and New Vulnerabilities | ||
| 10:50 am | KRAS Mutations in Histiocytic Neoplasms: Mutation Spectrum and Response to MEK Inhibition | Dongni Yi Mayo Clinic, Rochester, MN USA |
| 11:05 am | Cyclin D1 Overexpression Drives Replication Stress and Creates Therapeutic Vulnerabilities in Histiocytic Neoplasms | Dongni Yi Mayo Clinic, Rochester, MN USA |
| 11:20 am | Clonal Hematopoiesis Predicts Response to Interferonα in ErdheimChester Disease and Myeloproliferative Neoplasms | Jérôme Razanamahery Dijon University Hospital, France |
| 11:35 am | Impact of Additional Genetic Variants in the Course of ErdheimChester Disease… a Multicentric Longitudinal Study of 445 French Patients | Félicien Triboulet Pitié-Salpêtrière hospital, Sorbonne University, Paris, France |
| 11:50 am | Group Photo | |
| 12:00 pm | Lunch | |
| Afternoon Abstract Presentations Session 3: Pixels to Patterns: ECD and Xanthogranuloma | ||
| 1:00 pm | Central Nervous System Imaging Abnormalities in Erdheim–Chester Disease: A Systematic Review | Mustafa Abomohsen Brookdale University Hospital and Medical Center, Brooklyn, NY USA |
| 1:15 pm | Musculoskeletal System Imaging Abnormalities in Erdheim–Chester Disease: A Systematic Review | Mustafa Abomohsen Brookdale University Hospital and Medical Center, Brooklyn, NY USA |
| 1:30 pm | Patterns of Presentation and Outcomes in Adult Xanthogranuloma | Guneet Janda Mayo Clinic, Rochester, MN USA |
| 1:45 pm | Networking Break | |
| Afternoon Abstract Presentations Session 4: Care in the Real World: Treatment Patterns and Survivorship | ||
| 2:00 pm | Real World Frontline Systemic AntiCancer Treatment Patterns and Outcomes in Erdheim–Chester Disease | Carla Isabel Borre Mayo Clinic, Rochester, MN USA |
| 2:15 pm | Burden of Chronic Health Conditions After Diagnosis of Erdheim–Chester Disease (ECD): Early Results from the Histiocytic Disorder Survivor Study | Gaurav Goyal University of Alabama at Birmingham, Birmingham, AL USA |
| 2:30 pm | DestombesRosaiDorfman Disease: Clinical, Molecular Characteristics and Treatment Response: data from a retrospective cohort of 107 patients | Julien Haroche Department of Internal Medicine & E3M Institute, Pitié-Salpêtrière Hospital, AP-HP – Sorbonne University, Paris, France |
| 2:45 pm | Considerations for Assessment and Treatment of Neuropsychiatric Symptoms in ECD | Anneka Johnston Rush University Medical Center, Chicago IL |
| Poster Presentations and Networking | ||
| 3:00 pm | Erdheim-Chester Disease (ECD) is a Rare Histiocytic Neoplasm of Non-Langerhans Cell Histiocytosis | Abdalla Bowirrat Ariel University, Israel |
| Diagnostic challenges in mixed Erdheim-Chester Disease and Langerhans Cell Histiocytosis in a 54-year-old male | Sameer Andani Moffitt Cancer Center & University of South Florida |
|
| A Mycosis Fungoides-like Drug Reaction Rapidly Resolving Following Switch from BRAF Inhibitor to MEK Inhibitor Monotherapy in Erdheim-Chester Disease | Saipriya Ayyar University of Cincinnati/UC Health, Cincinnati OH |
|
| Multimodality Imaging in Erdheim–Chester Disease: Radiologic Insights from Pediatric and Adult Cases | Priyanka Naranje All India Institute of Medical Sciences, New Delhi, India |
|
| Cardiovascular System Imaging Abnormalities in Erdheim-Chester Disease: A Systematic Review | Mustafa Abomohsen Brookdale University Hospital and Medical Center, Brooklyn, NY USA |
|
| BRAF-Positive Erdheim–Chester Disease with Progressive Pulmonary and Vascular Involvement Successfully Treated with Vemurafenib: A Case Report | Hulya Yilmaz Tekinhatun Diyarbakir Gazi Yasargil Training and Research Hospital, Turkey |
|
| Concurrent Erdheim-Chester Disease and Classical Hodgkin Lymphoma with unexpected response to lymphoma-directed therapy | Rebecca Denson New York Presbyterian-Weill Cornell Medicine, New York, NY |
|
| Abdominal Imaging Abnormalities in Erdheim-Chester Disease: A Systematic Review | Mustafa Abomohsen Brookdale University Hospital and Medical Center, Brooklyn, NY USA |
|
| Prevalence and distribution of Erdheim-Chester Disease in the UK estimated from referral to a National Advisory Panel | Matthew Collin Newcastle University, United Kingdom |
|
| Challenging Case Study | ||
| 3:45 pm | TBD | Matthew Collin Newcastle University, United Kingdom |
| Challenging Case Study | ||
| 4:15 pm | The Clue Was the Blood Pressure: Atypical Erdheim–Chester Disease | Jithma Abeykoon Mayo Clinic, Rochester, MN USA |
| Closing Remarks & Student Abstract Award | ||
| 4:45 pm | ECD Global Alliance into the Future | Jerome Henson Executive Director, ECD Global Alliance, DeRidder, LA USA |
| 4:55 pm | Junior Investigator – Best Student Presentation Award | Oshrat Hershkovitz-Rokah Ariel University & Assuta Medical Center, Tel Aviv, Israel |