The Histiocytosis Program offers your child compassionate care from some of the world’s most experienced pediatric oncologists and pediatric subspecialists. Our program treats the two main types of histiocytosis — Langerhans cell histiocytosis (LCH) and hemophagocytic lymphohistiocytosis (HCH) — as well as other rare histiocytic disorders.
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.
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:
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:
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:
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.
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.
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 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.
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:
Referring physicians: 617-632-5508 or 1-888-Pedi-Onc (733-4662)
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:
Boston Children's Hospital300 Longwood AvenueBoston, MA 02115
Dana-Farber Cancer Institute450 Brookline Ave.Boston, MA 02215
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