About the Program

The Histiocytosis Program offers your child compassionate care from some of the world’s most experienced pediatric oncologists at Dana-Farber Cancer Institute and internationally recognized pediatric subspecialists at Boston Children’s Hospital.

• 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.
• Our researchers are searching for the causes of histiocytosis and working to introduce new treatment options.
• If your child has hemophagocytic lymphohistiocytosis (HLH) and needs a stem cell transplant, we offer access to one of the most experienced pediatric stem cell transplant teams in the country.

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

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 Treatment Approach

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.

Through Dana-Farber/Boston Children's, a 60-year partnership between Dana-Farber Cancer Institute and Boston Children's Hospital, your child will receive individualized care to treat every aspect of his or her 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.

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.

The Treatment Team

Our staff of compassionate and experienced pediatric specialists includes hematology/oncology experts as well as a pediatric dentist. 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.

• Barbara A Degar, MD
  Degar is a pediatric hematologist oncologist at Dana-Farber/Boston Children’s. Her research and clinical expertise focus on the treatment of leukemia and histiocytosis. She is also an assistant professor of Pediatrics at Harvard Medical School.
• Megan E. Anderson, MD
  Anderson is an orthopedic surgeon who specializes in the treatment of bone and soft tissue tumors. She trained at the Cleveland Clinic Foundation and Mass General Hospital, and is an instructor in Orthopedic Surgery at Harvard Medical School.
• Mark Daniel Fleming, MD, DPhil
  Fleming is a hematopathologist and Boston Children’s Hospital’s pathologist-in-chief. He specializes in the diagnosis of cancers of the blood and lymph systems. His research focuses on iron metabolism in the blood. He is an associate professor of Pathology at Harvard Medical School.
• Stephen E. Gellis, MD
  Gellis is a pediatric dermatologist and the director of Boston Children’s Hospital’s Dermatology Program. In addition, he is an assistant professor at Harvard Medical School.
• Liliana Goumnerova, MD
  Goumnerova is a pediatric neurosurgeon specializing in the treatment of brain tumors and spinal column tumors and other conditions of the central nervous system. Her research focuses on neural development and the formation of tumors. She is an associate professor at Harvard Medical School.
• Karen J. Marcus, MD
  Marcus specializes in pediatric oncology and radiation oncology. She is an associate professor at Harvard Medical School and co-chair of Pediatric Oncology Institutional Review Board.
• Howard L Needleman, DMD
  Needleman is a pediatric dentist and has worked in Boston Children’s Hospital’s Department of Dentistry since 1974. He is also the clinical professor of Pediatric Dentistry at Harvard School of Dental Medicine. He is an expert in the treatment of traumatic injuries to the teeth and mouth in children.
• Carlos Rodriguez-Galindo, MD
  Rodriguez-Galindo is a hematologist oncologist. He serves on the Executive Board of the Histiocyte Society and is co-chair of the Histiocyte Society’s Langerhans Histiocytosis IV Study Group. In addition, he is medical director of Pediatric Oncology Clinical Trials and a program leader in Experimental Therapeutics.
• Jo-Anne Vergilio, MD
  Vergilio is a pediatric hematopathologist with expertise in anatomic and clinical pathology. She is the director of Hematopathology and an assistant professor of Pathology at Harvard Medical School.
• Nicole Ullrich, MD, MPH
  Ullrich is a pediatric oncologist and researcher with expertise in neuro-oncology and neurofibromatosis. She is the director of neuro-oncology and an assistant professor in Neurology at Harvard Medical School.

Clinical Research

The main objective of our histiocytosis research program is to improve the understanding and treatment of Langerhans cell histiocytosis and hemagophagocytic lymphohistiocytosis. We participate in internal research initiatives as well as those directed by the Histiocyte Society, an international research collaboration.

Dana-Farber/Boston Children’s is a world leader in opening new avenues of "translational research," bringing laboratory advances to the bedside and doctor's office as quickly as possible. All of our senior medical staff members of the Histiocytosis Program participate in clinical research activities.

Following are some of the research initiatives under way in our research program:

• The program treats patients in accordance with protocols established by the Histiocyte Society. Children with LCH and HLH have the opportunity to take part in clinical trials organized by the Histiocyte Society.
• We established a clinical database to identify patterns of disease in patients with LCH and to determine the effectiveness of specific treatments.
• Our clinical database has helped us identify a unique genetic mutation associated with histiocytosis. We are working to develop new treatments based on this discovery.
• We are evaluating the biology of histiocytic disorders. If your child has biopsies of histiocytic lesions, you may be offered the chance to participate in a study that uses tissue samples to learn more about the condition.
• Our researchers are working to develop reduced intensity treatment strategies that will have fewer short-term and long-term side effects.

Histiocyte Society

The Histiocyte Society is a nonprofit, international group of more than 200 physicians and scientists who are committed to improving the lives of patients with histiocytosis by conducting clinical and laboratory research into the causes and treatment of this disease. The society provides a forum for the exchange of information and a framework for organized activities.

The Histiocyte Society also releases treatment guidelines for LCH and HCH. Children treated through our Histiocytosis Program have the opportunity to participate in innovative clinical trials organized by the Histiocyte Society.

Carlos Rodriguez-Galindo, MD, director of the Bone and Soft Tissue Program at Dana- Farber/Boston Children’s, serves on the Executive Board of the Histiocyte Society and is co-chair of the Histiocyte Society’s Langerhans Histiocytosis IV Study Group.

For more information about the Histiocyte Society, please contact Barbara Degar, MD, at 617-632-5508.

Clinical trials

Histiocytosis Research Program faculty actively contribute to and participate in internally led research initiatives, as well as those directed by the Histiocyte Society.

Following are some of the research initiatives under way in the research program:

• Our program treats patients in accordance with protocols established by the Histiocyte Society. LCH and HLH patients are offered the opportunity to take part in clinical trials organized by the Histiocyte Society.
• A clinical database has been established to identify patterns of disease in patients with LCH and to determine the effectiveness of specific treatments.
• In collaboration with the laboratory of Barrett Rollins, MD, PhD, the program is evaluating the biology of histiocytic disorders. If your child undergoes biopsies of histiocytic lesions, you may be offered the chance to participate in a study that uses tissue samples to help us understand more about the condition.

Contact Us

Referring physicians: 617-632-5508 or 1-888-Pedi-Onc (733-4662) 

New patients and second opinions

We understand a histiocytosis diagnosis is difficult to cope with. We are always available to offer a consultation or second opinion for your child.

If your child has been diagnosed with histiocytosis, please contact our program at 888-PEDI-ONC (1-888-733-4662) or 617-632-5508.

We are always available to offer a second opinion. To schedule an appointment with our team, please have a full summary of your child’s initial diagnosis at hand. This includes:

• any laboratory or pathology reports
• any x-ray or radiographic images
• a list of any previous treatments your child has received.

Mailing addresses

Boston Children's Hospital
300 Longwood Avenue
Boston, MA 02115

Dana-Farber Cancer Institute
450 Brookline Ave.
Boston, MA 02215