Patient and Family Resources
Histiocytosis Association
The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders while leading the search for a cure.
Erdheim-Chester Disease Global Alliance
Erdheim-Chester Disease (ECD) is an extremely rare blood cancer that can affect many different organs of the body. It is characterized by excessive production and accumulation of specific cells whose normal functions are to fight infections and eliminate foreign bodies. These cells, called histiocytes, infiltrate the loose connective tissue within body organs and cause inflammation. As a result, this tissue becomes thickened, dense, and fibrotic. More >
Webinars
Overview/general topics
Overview of Adult Histiocytosis
2025 ECDGA Patient & Family Gathering in Barcelona
Under the Microscope
Histiocytosis Pathology
Interview on Approach to the Patient:
From Endocrinopathy to the Diagnosis of a Histiocytic Disorder
Understanding the NCCN Guidelines® for Histiocytosis in Adults Webinar – June 2021
Erdheim-Chester Disease
Erdheim-Chester disease:
What do we know a century later?
Erdheim-Chester Disease:
What is it and what are the signs and symptoms?
Erdheim-Chester disease:
Treatment options after diagnosis
Erdheim-Chester disease:
Finding a specialist and long-term monitoring
Erdheim-Chester disease:
A review of updated guidelines in the molecular era
The Importance of Early Detection
Dr. Gaurav Goyal, University of Alabama, Birmingham
Treating Erdheim
Chester Disease with Dr. Ronald S. Go, MD.
Erdheim-Chester disease:
???
Talk for adult patients with Histiocytosis and ECD
Organized by OR Association and HA
Langerhans Cell Histiocytosis
Long-term outcomes among adults with LCH
w/ Dr. Goyal and Dr. Acosta Medina
Pulmonary Hypertension in
Pulmonary Langerhans cell histiocytosis
Rosai-Dorfman Disease
Rosai Dorfman Disease
From Rare to Understood Webinar
"How I Diagnose Rosai-Dorfman Disease"
with Dr. Ravindran and Dr. Rech
Malignant Histiocytic Neoplasms
Malignant Histiocytosis Pathology Interview
with Dr. Aishwarya Ravindran and Dr. Karen Rech
Malignant Histiocytosis Clinical Interview
with Dr Gaurav Goyal and Dr. Gordan Ruan
Research and Survivorship
Why Research Matters
with Gaurav Goyal, MD
Histiocytosis & Survivorship Working now, for the future of histiocytosis