Webinars
Upcoming Webinars & Recordings
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Expert-led webinars are scheduled as often as possible for all audiences. Stay tuned for more webinars this year!
Upcoming:
Topic: Managing Pain, Fatigue, & Depression in ECD
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.
No results found.
Recordings
The following videos are also posted to our YouTube Channel.
For more ECDGA videos, please see the complete ECDGA YouTube Channel list at – Click Here
In this educational webinar, Dr. Mohammed G. Atta, MD, nephrologist at Johns Hopkins Hospital, shares an in-depth overview of how Erdheim-Chester Disease (ECD) can affect the kidneys and what ...
This patient education session features Dr. XinXin Cao, a hematologist at Peking Union Medical College Hospital, an ECD referral care center. She talks about common histiocytic disorders, ...
In this special ECD webinar, Dr. Jerome Razanamahery, an internal medicine doctor at Dijon University Hospital, an ECD referral care center, talks about Erdheim-Chester Disease (ECD). He ...
Presented by Dr. Sam Reynolds, Hematologist–Oncologist in partnership with the Erdheim-Chester Disease Global Alliance (ECDGA). This presentation explores the molecular and clinical complexity of Erdheim-Chester Disease (ECD)—a rare histiocytic disorder characterized by the overproduction of abnormal immune cells called histiocytes.
Presented by Dr. Gaurav Goyal, University of Alabama at Birmingham In partnership with the Erdheim-Chester Disease Global Alliance (ECDGA) This presentation explores the importance of survivorship research in Erdheim-Chester Disease (ECD) and the critical role patients play in shaping that research.
Managing Diabetes Insipidus (DI), now called Arginine Vasopressin Deficiency (AVP-D), is critical for patients, families, and clinicians — especially those with Erdheim-Chester Disease (ECD) or Langerhans Cell Histiocytosis (LCH), where AVP-D is more common.
Xavier Solanich, MD, PhD is an internal medicine physician at Bellvitge University Hospital (BUH), where he specializes in the treatment of patients with immunological disorders and rare diseases, including histiocytosis.
The Leukemia & Lymphoma Society offers a free service called the Clinical Trial Support Center (CTSC) to help blood cancer patients, caregivers, and healthcare professionals find potential clinical trials and overcome enrollment barriers. This webinar will discuss the process and support Erdheim-Chester patients.
Information Specialists offer free, one-on-one education, psychosocial support, and advocacy for blood cancer patients, caregivers, and families. They cover disease and treatment options, clinical trials, mental health support, and treatment team communication.
Overview of the various education resources and support services provided to patients and their families and the healthcare providers that care for them.
The 8th Annual International ECD Medical Symposium was held on November 16, 2021. This virtual experience was organized in hopes that the medical community is provided the opportunity to share scientific findings, patient outcomes, and case studies related to Erdheim-Chester Disease and other histiocytic disorders.
The ECD Global Alliance (ECDGA) and the Histiocytosis Association co-host Beyond the Office Visit virtual education series, Part Two: Functional Nutrition & Wellness.
Tim Facciola, Certified Personal Trainer & Movement Specialist, joins us in a conversation about incorporating movement and exercise into life when managing a chronic illness or a rare disease, such as Erdheim-Chester Disease.
Learn about the treatments used to treat Erdheim-Chester disease (ECD), what to expect over time and the side effects that may be involved.
Taking part in a clinical trial can have many benefits for the patient and the community. We hope this session will help you better understand clinical trials, how to talk to your doctor about trials, and leave you feeling prepared with the right resources.
Dr. Michael Girschikofsky from the Elisabethinen Hospital Linz explains ECD to German-speaking ECD patients and families.
Listen to Kevin O'Brien, NP, and Josef Lacy discussing mental health challenges and effective techniques for overcoming them. Gain insights firsthand from an ECD patient who shares his inspiring journey triumphing over mental health issues.
Listen to an experienced ECD caregiver as she shares her insights and coping mechanisms for self-care.
This is the start of the Beyond the Office Visit virtual education series co-hosted with the Histiocytosis Association.
An educational webinar was held to explain the newest Erdheim-Chester Disease (ECD) consensus document and learn how to use it for care and payer support.
In this review of the latest ECD Consensus Guidelines 2020, the presentation and discussion are tailored for the medical professional community.
In this webinar, the doctors at Memorial Sloan Kettering Cancer Center (MSK) help further your understanding of how current eye involvement may affect daily life and how to obtain better outcomes and results.
This webinar, co-hosted by the Histiocytosis Association and Erdheim-Chester Disease Global Alliance focused on ECD and covers endocrine conditions and their management across all histiocytic disorders.
A review of the recently published National Comprehensive Cancer Network (NCCN) Guidelines® for Histiocytosis.
Dr. Gaurav Goyal, University of Alabama Birmingham, led the educational meeting by presenting the topic of Impact on adult patients with LCH and Erdheim-Chester, ongoing treatments, and studies.
Dr. Gaurav Goyal, University of Alabama, Birmingham, led the educational meeting by presenting the topic of Impact on adult patients with LCH and Erdheim-Chester, ongoing treatments, and studies.
No results found.