Spanish Community Chat
2025-10-14 11:00 - 12:00, 2025-12-16 11:00 - 12:00, 2026-01-15 11:00 - 12:00, 2026-02-17 11:00 - 12:00 (America/Chicago)
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Chats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues, treatments, tests, knowledgeable doctors, symptoms, treatment side effects, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other.
Please read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar.
NOTE: Check your time zone here: Time Zone Converter.
There will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.

Caregiver Community Chat
2025-10-14 19:00 - 20:00, 2025-11-18 19:00 - 20:00, 2025-12-09 19:00 - 20:00, 2026-01-13 13:00 - 14:00, 2026-02-10 13:00 - 14:00

Canadian Community Chat
2025-10-16 11:00 - 12:00, 2025-11-19 11:00 - 12:00, 2026-01-21 11:00 - 12:00, 2026-02-19 11:00 - 12:00

Topic: Exploring of alternating signaling and its impact on precision therapy in patients with Erdheim-Chester Disease
2025-10-21 14:00 - 15:00
Date: October 21, 2025
Time: 2:00 PM CT
Speaker: Samuel B. Reynolds, M.D.
Moffitt Cancer Center
Dr. Reynolds is originally from the Boston area and completed medical school at The University of South Florida Morsani College of Medicine. He would then complete an Internal Medicine residency and chief residency at The University of Louisville and a Hematology & Medical Oncology fellowship at The University of Michigan. He began to focus on histiocytic neoplasms in the later part of his training in Ann Arbor. Here, he founded the Michigan Histiocytosis Working Group and has since joined the Histiocytosis Care Network as a researcher and physician.
Throughout his career, Dr. Reynolds has been passionate about the molecular characterization and translational care of hematologic disorders. Under his T32 at The University of Michigan, he would publish several manuscripts pertaining to both outcomes with respect to targeted therapy and trends in peripheral blood monocytosis in histiocytic disorders. He currently serves as an Assistant Professor at the Moffitt Cancer Center and specializes in the research and care of myeloid and histiocytic neoplasms.
The webinar will explore the diversity of Erdheim-Chester Disease (ECD), both among patients and at the genetic level. Because ECD is a rare and complex hematologic cancer, individualized treatment requires a collaborative approach. Understanding each patient’s unique molecular profile—the DNA changes that drive their disease—is key to guiding effective therapy.

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Australian/New Zealand Community Chat
2025-10-24 18:00 - 19:00, 2025-11-20 18:00 - 19:00, 2025-12-15 01:00 - 02:00, 2026-01-26 01:00 - 02:00, 2026-02-23 01:00 - 02:00

Peer-to-Peer Community Chat
2025-10-28 13:00 - 14:00, 2025-11-25 13:00 - 14:00, 2025-12-30 13:00 - 14:00, 2026-01-27 13:00 - 14:00

Topic: Diagnosis and Treatment of Histiocytic Disorders
2025-11-19 06:00 - 07:00
Speaker: XinXin Cao, MD
Cancer Hospital, Chinese Academy of Medical Sciences, Chief Physician, PhD Supervisor, Deputy Director of Internal Medicine (Langfang Campus) Has long been engaged in clinical and basic research on histiocytic disorders.
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Topic: Erdheim-Chester Disease (ECD): Decoding diagnosis and treatments
2025-12-01 17:00 - 18:00
Speaker: Jerome Razanamahery, MD
Dijon University Hospital
Date: December 1, 2025
Time: 5:00 PM CET (UTC +1) (Paris Time)
Dr. Razanamahery is an expert in internal medicine with a recognized specialization in the field of rare histiocytoses, including Erdheim-Chester Disease (ECD). He is a clinician-researcher at the University Hospital Center of Dijon, where he heads the unit dedicated to histiocytic disorders.
With many years of experience and under the mentorship of Pr Haroche, Dr. Razanamahery actively participates in clinical research and is a member of national and international reference networks on histiocytoses. His commitment is to provide cutting-edge care while ensuring that every patient and their family receive clear information and personalized support to navigate the complexity of this disease as effectively as possible.
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French Community Chat
2026-01-09 08:00 - 09:00

Italian Community Chat
2026-01-20 11:00 - 12:00

German Community Chat
2026-01-29 11:00 - 12:00
Chats are open for any discussion topic within reason. Often discussed topics include ECD diagnosis issues, treatments, tests, knowledgeable doctors, symptoms, treatment side effects, and sometimes just friendly discussions about pleasant things happening in participants’ lives. Most who attend the sessions have found connections and continue to correspond outside of the chat sessions. The meetings also provide a support structure for those who are interested in learning as much as they can about ECD and providing mutual support to each other.
Register Today
Please read our Virtual Participation Policy before joining an ECD Global Alliance meeting or webinar.
NOTE: Check your time zone here: Time Zone Converter.
There will not be a medical professional assisting with these calls. Every patient is unique and medical advice cannot be offered here; we encourage all ideas to be shared with doctors. Please read our Virtual Participation Policy.

Topic: Erdheim-Chester Disease (ECD): A Nephrology Perspective
2026-01-29 13:00 - 14:00
Speaker: Mo Atta, MD, MPH
Johns Hopkins Hospital
Department of Nephrology
Date: January 29, 2026
Time: 1:00 PM CST
Dr. Mohamed G. Atta is a Professor of Medicine at Johns Hopkins University where he’s a practicing Nephrologist. He trained in nephrology at the Urology and Nephrology Center at Mansoura University and at Johns Hopkins. Dr. Atta also holds a Master of Public Health degree from Johns Hopkins and is a member of multiple professional organizations, including the American Society of Nephrology. He has been the principal investigator on several studies, serves as a peer reviewer for numerous medical journals, and has authored many articles across a range of scientific publications.
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Topic: Managing Pain, Fatigue, & Depression in ECD
2026-02-19 13:00 - 14:00
Speaker: Kevin O’Brien
RN, MS-CRNP, Nurse Practitioner,
Clinical Investigator, Genome Research Institute,
National Institutes of Health
Date: February 19, 2026
Time: 1:00 PM CST
Kevin O’Brien is a nurse practitioner and clinical investigator at the National Human Genome Research Institute (NHGRI) of the National Institutes of Health in Bethesda, Maryland. He earned his Bachelor of Science degree from Johns Hopkins University and his Master of Science and Nurse Practitioner degree from the University of Maryland.
Kevin has played a key role in NHGRI clinical research, including protocol 15-HG-0006, a clinical trial investigating dabrafenib and trametinib in BRAF-positive patients with Erdheim-Chester disease (ECD), as well as the Natural History of ECD study.
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