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 research has taught us about kidney outcomes in people living with this rare disease.
Dr. Atta explains kidney involvement in ECD using clear visuals and real-world examples, helping patients and families better understand why kidney disease is so common in ECD and how it may progress over time.
Topics covered in this webinar include:
- How Erdheim-Chester Disease affects the kidneys and urinary system
- What doctors mean by the “hairy kidney” appearance on imaging
- Why kidney involvement is often silent and diagnosed late
- The role of tissue biopsy and molecular testing in ECD
- How kidney function may change over time in people with ECD
- Factors linked to kidney disease progression and outcomes
- An overview of historical and modern approaches used in ECD care
- Managing kidney complications such as obstruction, hypertension, and kidney failure
- Dialysis and kidney transplant experiences in ECD patients
- The importance of patient–physician partnership in rare diseases
This webinar highlights how advances in research and targeted therapies have transformed outcomes for many ECD patients, while also emphasizing the importance of awareness, early recognition, and specialized care.
We are grateful to Dr. Atta for sharing his expertise and for his continued partnership with the Erdheim-Chester Disease community.