Histiocytosis Program

Who we are

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/Children's Hospital Cancer Center (DF/CHCC), 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.

Through DF/CHCC, a 60-year partnership between Dana-Farber Cancer Institute and Children's, children receive individualized care to treat every aspect of their 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.