Hemophilia is an inherited disorder that prevents people from being able to stop bleeding. Though a lifelong disease, with careful management, informed decisions and recognition of complications, many children with hemophilia can live healthy, active lives with a normal life span.
Boston Children's Hospital is the pediatric site of the Boston Hemophilia Center, the largest hemophilia program in New England.
As a federally funded hemophilia treatment center and joint program withBrigham and Women's Hospital, we provide comprehensive, compassionate care to children and adults with hemophilia and other bleeding disorders.
The Boston Hemophilia Center has adopted a family-centered model of 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. Our services include, but are not limited to, the following:
- Comprehensive medical evaluation and treatment
- Ongoing medical management
- Counseling and support
- Access to new treatment approaches through clinical research
We care for infants, children, adolescents and young adults. Adult patients are treated at Brigham and Women's. In general, we transition our patients to specialists at Brigham and Women's by the time they’re 22.
At the Boston Hemophilia Center, our pediatric team specializes in treating infants, children and adolescents with:
Following the initial visit, patients are seen for comprehensive bleeding disorder assessments once every year or every other year, in addition to more frequent visits as required.
Working with you and your child, our team develops an ongoing medical care plan that addresses your child’s physical, emotional and educational needs.
Services we provide
We are always available to answer health-related questions. Our ongoing management services provide patients and families with:
- Clinic visits focused on education and individualized care with the goal of helping you effectively manage your child’s disease
- Evaluation of bleeding episodes, which includes:
- giving medical orders to home care nurses who can infuse the patient at home
- identifying and determining when a clinic visit is necessary
- identifying and determining when an emergency room visit or admission is required
- addressing home infusion questions
- Ongoing dialogue and teaching with families between clinic visits by phone
- Answers to questions that may arise between annual visits
Genetic testing and counseling
The Boston Hemophilia Center offers the services of a physician who is both a hematologist and a geneticist to advise families on the genetic implications of hemophilia. This can be especially important for families who are carriers of the illness when making the decision to have additional children, or as children with hemophilia or carriers reach adulthood.
For more information about our available genetic testing and counseling services, please call 617-355-4977.
How to reach us
Parents can contact their nurse practitioner or hematologist during the week by calling 617-355-6101.
During the week, the nurse practitioner can be paged by calling 617-355-6369 and asking for pager #1254.
On weekends or evenings, a hematologist can be paged by calling 617-355-6369 and asking for the hematologist on-call.