Histiocytosis Program Overview

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Contact the Histiocytosis Program

Histiocytosis is a group of rare diseases that most often affect young children, but can occur at any age. Histiocytosis refers to a group of syndromes characterized by the abnormal growth of certain immune cells called histiocytes, which include monocytes, macrophages and dendritic cells.

There are two main types of histiocytosis:

  • Langerhans cell histiocytosis (LCH)
    • In the past, LCH has been referred to by many different names, including: Histiocytosis X, Eosinophilic granuloma, Hand-Schuller-Christian Disease, Letterer-Siwe Disease, Hashimoto-Pritzker Disease
  • Hemophagocytic lymphohistiocytosis (HLH)

Both LCH and HLH are rare diseases that affect each child differently. In addition, children with other rare histiocytic disorders are treated through the Histiocytosis Program. These conditions include:

  • juvenile xanthogranuloma
  • Rosai Dorfman disease

Our physicians are focused on family-centered care: From your first visit, you’ll work with a team of professionals who are committed to supporting all of your family’s physical and psychosocial needs.

At Dana-Farber/Boston Children's Hospital Cancer and Blood Disorders Center, we consider you and your child integral parts of the care team and not simply recipients of care. You and your team will work together to customize a plan of care for your child.

Our 60-year partnership means that Dana-Farber Cancer Institute and Boston Children's provides individualized care to treat every aspect of your child's condition from an expert team of subspecialists, including:

  • oncologists
  • dermatologists
  • orthopedists
  • radiologists
  • pulmonologists
  • endocrinologists
  • gastro-enterologists
  • neurologists
  • dentists
  • orthopedic surgeons
  • neurosurgeons
  • radiation oncologists

Other pediatric care providers, including other subspecialists, nutritionists, physical and occupational therapists, psychologists and social workers, are available for consultation, if needed.

Children treated in the Histiocytosis Program also benefit from the work of our researchers, who are striving to understand the scientific causes of histiocytosis, which results in the introduction of new treatment options.

About histiocytosis

Histiocytosis refers to a group of syndromes characterized by the abnormal growth of certain immune cells called histiocytes, which include monocytes, macrophages and dendritic cells. Children with histiocytosis are treated through our Histiocytosis Program, a part of Dana-Farber/Children’s Hospital Cancer Center.

Although your child will be treated through the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, histiocytosis is not a form of cancer. However, it does share some of the characteristics of cancer and is often treated using some of the same techniques, such as chemotherapy.

Langerhans cell histiocytosis has been referred to by many different names including: histiocytosis X, eosinophilic granuloma, Hand Schuller Christian disease, Letterer Siwe disease and Hashimoto Pritzker disease. 

 

Our expertise

Dana-Farber/Boston Children’s Cancer and Blood DisordersCenter offers your child care from many of the world’s most experienced pediatric oncologists at Dana-Farber Cancer Institute and internationally recognized pediatric subspecialists at Boston Children’s.

  • Every aspect of your child’s condition is evaluated by a subspecialist with in-depth knowledge of histiocytosis, including pediatric oncologists, dermatologists, orthopedists and radiologists.

  • We participate in clinical trials sponsored by the Histiocyte Society, offering new therapeutic options to our young patients.

  • If your child has HLH (hemophagocytic lymphohistiocytosis) and needs a stem cell transplant, we offer access to one of the most experienced pediatric stem cell transplant teams in the country.

  • Our researchers are searching for the causes of histiocytosis and working to introduce new treatment options.

  • We established a clinical database to identify patterns of disease in patients with Langerhans cell histiocytosis and to determine the effectiveness of their treatments. This database has helped us identify a genetic mutation associated with Langerhans cell histiocytosis.

The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
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