Title: “Layers of Complexity: ECD Diagnosis and Management in the Presence of Confounding Comorbidities”
Time: 1:30 PM – 1:55 PM
Location: Bellvitge University Hospital Auditorium
As Erdheim-Chester Disease (ECD) becomes more recognized and understood within the medical community, a new challenge is emerging: what happens when a patient’s symptoms don’t follow a predictable pattern, or worse, when ECD isn’t the only condition at play?
In this critical session, Dr. Jerome Razanamahery of Dijon University Hospital brings his expertise to the forefront, addressing the diagnostic and therapeutic complexities of ECD when it presents alongside other diseases. His talk, “Layers of Complexity,” is one of the most important of the day for clinicians who manage rare disease cases with overlapping or unclear clinical features.
The Diagnostic Challenge
ECD is a disease of many faces. It can affect bones, the central nervous system, kidneys, cardiovascular structures, and other organs. Symptoms vary widely and often mimic more common illnesses. Add to this a second (or third) comorbid condition—such as autoimmune disease, malignancy, or vascular inflammation—and the picture becomes even more clouded.
In this session, Dr. Razanamahery will explore:
- How misdiagnosis or delayed diagnosis often occurs when ECD is masked by more dominant or familiar comorbid presentations
- What clinical tools, imaging strategies, and molecular insights can help disentangle overlapping pathologies
- Case examples where ECD was misinterpreted as sarcoidosis, vasculitis, or malignancy, and what lessons were learned
- The importance of a multidisciplinary approach, particularly when treatment for one condition may inadvertently worsen another
Expertise in Complex Cases
Dr. Razanamahery leads a recognized Center of Competence for Histiocytic Disorders in Dijon, France, where his team specializes in tackling diagnostically ambiguous or high-complexity cases. He is known for bridging internal medicine with clinical immunology, drawing on a broad toolkit to manage patients with rare and overlapping diseases.
This talk is especially relevant for physicians who work in:
- General Internal Medicine
- Hematology/Oncology
- Rheumatology
- Immunology
- Neurology
- Nephrology
These specialties frequently encounter patients with multisystem involvement and may be among the first to recognize ECD—especially when the disease does not appear in isolation.
The Broader Implications for ECD Care
One of the themes of this year’s Medical Symposium is refining real-world diagnosis and care pathways for Erdheim-Chester Disease. As molecular tools and clinical awareness improve, new layers of complexity are surfacing, particularly in cases where ECD is not the only condition altering the patient’s health.
Dr. Razanamahery’s presentation underscores the need for nuanced care, cautious diagnostics, and collaboration across specialties. It also highlights the reality that ECD rarely exists in a vacuum—and that advancing care will require not just more science, but deeper clinical insight into how ECD interacts with the full human experience of health and illness.
Don’t Miss This Talk
If you’ve ever encountered a patient whose symptoms seemed contradictory, whose imaging didn’t fit the mold, or whose response to treatment raised new questions, this is the session for you. Dr. Razanamahery’s work is a reminder that treating ECD isn’t just about following a protocol; it’s about understanding the whole person and the full context of their care.
This keynote exemplifies the purpose of the ECDGA Medical Symposium: to bring together knowledge, challenge assumptions, and improve outcomes through collaboration and clarity.