Beyond the Office Visit: Managing the Cost of Histio Care
2022-03-01 12:00 - 13:00 (America/Chicago)
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This is the start of the Beyond the Office Visit virtual education series co-hosted with the Histiocytosis Association. Speakers Deandre Pate and Victoria Lassen from Memorial Sloan Kettering walk through ways to manage healthcare costs, find local assistance, and improve logistical burdens while living with a histiocytosis disorder.
Recorded February 2022

Beyond the Office Visit - Part Two: Functional Nutrition & Wellness
2022-05-05 12:00 - 13:00
The ECD Global Alliance (ECDGA) and the Histiocytosis Association co-host Beyond the Office Visit virtual education series, Part Two: Functional Nutrition & Wellness. During this session, Certified Health Coach and Certified Functional Nutrition Practitioner, Alyssa Cabral, explained the role of functional wellness and nutrition when living with or caring for someone with histiocytosis or any rare/chronic condition.

Beyond the Office Visit: Moving Through Rare Disease
2022-05-19 12:00 - 13:00
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.

Erdheim-Chester Disease Targeted Therapies: The good and the bad
2022-08-15 12:00 - 13:00
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Learn about the treatments used to treat Erdheim-Chester disease (ECD), what to expect over time and the side effects that may be involved. Ginny-Tyler Meadows is a clinical pharmacist serving the hematology/oncology clinics at The Kirklin Clinic at the University of Alabama at Birmingham Hospital. She specifically assists patients with prescribed oral oncolytic therapies. She is passionate about patient education and advocacy in addition to increasing patient access to medications.

Beyond the Office Visit: Navigating Clinical Trials for Histiocytosis
2022-09-21 12:00
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. Girschikofsky- erklärt Patienten und Familien ECD auf Deutsch
2024-11-23 12:00 - 13:00
Dr. Michael Girschikofsky from the Elisabethinen Hospital Linz explains ECD to German-speaking ECD patients and families.

Coping Strategies for Depression & Anxiety
2025-01-23 12:00 - 13:00
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.

Caring for yourself through the holidays
2025-01-23 12:00 - 13:00
Listen to an experienced ECD caregiver as she shares her insights and coping mechanisms for self-care.

The Leukemia & Lymphoma Society Support Series Part 2: Information Resource Center
2025-02-25 12:00 - 13:00
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.

Rosai Dorfman Disease
2025-03-13 12:00 - 13:00
Discover insights from a leading expert on Rosai-Dorfman Disease. Gain a deeper understanding of this rare condition, its symptoms, diagnosis, and the latest treatment options. Don’t miss out on expert knowledge that could make a difference!

The Leukemia & Lymphoma Society Support Series Part 3: Clinical Trial Support Center
2025-04-01 07:00 - 16:00
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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.

The Leukemia & Lymphoma Society Support Series Part 1: Overview of Services
2025-05-02 12:00 - 13:00
Overview of the various education resources and support services provided to patients and their families and the healthcare providers that care for them.

ECD, A Global Vision
2025-08-06 12:00 - 13:00
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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. In addition to his clinical work, he serves as a professor at the University of Barcelona and as principal investigator at the Bellvitge Biomedical Research Institute (IDIBELL). Dr. Solanich has contributed to numerous national and international research projects focused on autoimmune diseases, immunodeficiencies, and other rare disorders.
As the lead physician at the ECD Care Center at BUH, Dr. Solanich oversees the care of patients with ECD, a condition historically viewed as a multisystem inflammatory disorder. Recent breakthroughs in the genetics and immunology of the disease have revolutionized its understanding and treatment, prompting physicians to update and refine their protocols accordingly.

Topic: Managing Diabetes Insipidus (DI)
2025-08-28 14:00 - 17:00
[Arginine VasoPressin Deficiency (AVP-D)]
Speaker: Pat Gildroy, Ph.D
Pat Gildroy, lead administrator of the Facebook Group, “Got Arginine VasoPressin Deficiency?” about the resources, symptoms, tests, and the patient experience for those living with Arginine Vasopressin Deficiency, formerly known as Diabetes Insipidus.
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Topic: Survivorship in Erdheim-Chester Disease: Incorporating the patient voice
2025-09-23 13:00 - 14:00
Date: September 23, 2025
Time: 1:00 PM CT
Speaker: Gaurav Goyal, M.D.
University of Alabama at Birmingham
Dr. Goyal was born and raised in India and completed his Hematology-Oncology Fellowship at the Mayo Clinic in Rochester, Minnesota. During his time at the Mayo Clinic, he developed a specialized focus on histiocytic disorders, including Erdheim-Chester Disease, Langerhans cell histiocytosis, and Rosai-Dorfman Disease. He conducted multiple studies on histiocytosis and played a key role in establishing the first multidisciplinary Histiocytosis Working Group, aimed at improving care for individuals affected by these rare disorders.
Dr. Goyal subsequently joined the Hematology-Oncology Division at the University of Alabama at Birmingham (UAB), where he founded an Erdheim-Chester Disease care center. At UAB, he also launched the Histiocytic Disorder Survivor Study in partnership with the Erdheim-Chester Disease Global Alliance (ECDGA), further advancing research and support for patients with histiocytic disorders.

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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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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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