\n\t| 8:45 AM<\/td> | 15<\/td> | Manifestations of histiocytosis in adults<\/td> | Matthew Collin, MD, PhD<\/td> | 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.<\/td>\n<\/tr>\n |
\n\t| 9:00 AM<\/td> | 15<\/td> | Histiocytosis at the Cellular Level<\/td> | Astrid van Halteren, PhD<\/td> | 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<\/td>\n<\/tr>\n |
\n\t| 9:30 AM<\/td> | 15<\/td> | Tagreted Therapy: The Good, the Bad, and the Unaffordable<\/td> | Daniel Sokolowski, PharmD<\/td> | Overview of targeted treatments for histiocytosis and management of their adverse effects.<\/td>\n<\/tr>\n |
\n\t| 10:05 AM<\/td> | 15<\/td> | Advancing treatment for histiocytic neurodegeneration through patient specific modeling<\/td> | Nicole Coufal, MD, PhD<\/td> | The importance of patient samples to the science, and the importance of pilot funding and where we hope to take it in the future.<\/td>\n<\/tr>\n |
\n\t| 10:20 AM<\/td> | 15<\/td> | What should I know about ECD Treatment and My Heart? Potential cardiac side effects of ECD treatment.<\/td> | Carrie Lenneman, MD, MSCI<\/td> | Discuss common medication used in treatment of ECD . Review \u00a0potential cardiac side effects and management strategies of ECD treatment.<\/td>\n<\/tr>\n |
\n\t| 11:05 AM<\/td> | 40<\/td> | Expert Q&A<\/td> | Julien Haroche, MD, PhD
\nEli Diamond, MD
\nRonald Go, MD
\nGaurav Goyal, MD (Moderator)<\/td> | Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research.<\/td>\n<\/tr>\n |
\n\t| 1:00 PM<\/td> | 20<\/td> | Research Opportunities (Panel Discussion - 5 min each)<\/td> | Eli Diamond, MD (Registry)
\nGaurav Goyal, MD (Survivorship)
\nJithma Abeykoon, MD (CSF1R, ERK)
\nMatthew Collins, MD, PhD<\/td> | Hear the answers from ECD Medical experts about the open research opportunities. Hear up-to-date answers from those who are doing ECD research.<\/td>\n<\/tr>\n |
\n\t| 1:20 PM<\/td> | 20<\/td> | Expert Question & Answer Panel<\/td> | Gaurav Goyal, MD
\nEli Diamond, MD
\nJithme Abeykoon, MD
\nMatthew Collins, MD, PhD<\/td> | Ask your questions and hear the answers from ECD Medical experts. Hear up-to-date answers from those who are doing ECD research. Don\u2019t be shy, ask your questions about ECD in general! [Please note, the panel is unable to provide any personal medical advise during this session.]<\/td>\n<\/tr>\n |
\n\t| 1:40 PM<\/td> | 60<\/td> | Breakout Sessions<\/td> | Kevin O'Brien, RN, MS-CRNP (patients)
\n
\nSylvia Huang, PhD, MA, MEd, FAAHPM (Caregivers)<\/td> | Breakout Session:
\n
\n- Patients: Personal Challenges in Living with Erdheim-Chester Disease
\n
\n- Cargivers & Family: Addressing YOUR Emotional Needs<\/td>\n<\/tr>\n |
\n\t| 3:00 PM<\/td> | 15<\/td> | General medical management for ECD<\/td> | Kevin O'Brien, RN, MS-CRNP<\/td> | 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.<\/td>\n<\/tr>\n |
\n\t| 3:15 PM<\/td> | 15<\/td> | Emotional and Cognitive Changes in ECD<\/td> | Sylvia Huang, PhD, MA, MEd, FAAHPM<\/td> | 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.<\/td>\n<\/tr>\n |
\n\t| 3:30 PM<\/td> | 15<\/td> | Fatigue and Pain in Erdheim-Chester Disease: Root Causes and Practical Strategies for Energy, Relief, and Resilience<\/td> | Richard Taylor, PhD, DNP, CRNP, APN-BC<\/td> | This session is designed to empower patients and caregivers by unpacking the root causes of fatigue and pain in Erdheim-Chester Disease (ECD).
\n
\nThe goal is to offer meaningful, evidence-informed tools to reduce suffering, build resilience, and improve energy, mobility, and quality of life.<\/td>\n<\/tr>\n |
\n\t| 3:45 PM<\/td> | 15<\/td> | Movement is Medicine<\/td> | Elizabeth Bohorfoush, DPT<\/td> | Patients and caregivers receive guidance through gentle, low-level exercises to help reduce pain, build strength, improve posture, and encourage activity.<\/td>\n<\/tr>\n |
\n\t| 4:00 PM<\/td> | 20<\/td> | Expert Question & Answer Panel<\/td> | Kevin O'Brien, RN, MS-CRNP
\nSylvia Huang, PhD, MA, MEd, FAAHPM
\nRichard Taylor, PhD, DNP, CRNP, APN-BC
\nElizabeth Bohorfoush, DPT<\/td> | Ask your questions and hear the answers from the experts. Don\u2019t be shy, ask your questions! [Please note, the panel is unable to provide any personal medical advise during this session.]<\/td>\n<\/tr>\n |
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