• Boston Hemophilia Center

    Boston Hemophilia CenterThe Boston Hemophilia Center is the largest hemophilia program in New England. As a federally-funded hemophilia treatment center (HTC) and joint program with Brigham and Women's Hospital, we provide comprehensive, compassionate care to children and adults with hemophilia and other bleeding disorders. At Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, we care for infants, children, adolescents, and young adults. Adult patients are treated at Brigham and Women's Hospital.

    Boston Hemophilia Center services include:

    • Comprehensive medical evaluation and hemophilia treatment
    • Clinic visits focused on education and individualized care to help you effectively manage your child’s disease
    • Evaluation of bleeding episodes, which includes:
      • giving medical orders to home care nurses who can infuse your child 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
    • Counseling and support, including ongoing dialogue between clinic visits by phone
    • Access to new hemophilia treatment approaches through clinical research

    Bleeding Disorders We Treat

    Our pediatric team specializes in treating infants, children, and adolescents with:

    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.

    How We Diagnose and Treat Hemophilia

    The first step in treating a child with hemophilia is an accurate and complete diagnosis. Our pediatric hematologist may perform blood tests to confirm the diagnosis, including a complete blood count, a clotting factor test to check levels of “clotting factors” in the blood, and if indicated, DNA testing to test for a specific mutation and identify carriers. A review of the child’s family medical history may also aid in diagnosing the disease.

    Hemophilia treatment depends on the type and severity of disease, with the goal of preventing complications associated with bleeding (primarily head and joint bleeding). Factor replacement therapy is the basic treatment for people with bleeding and clotting disorders. This is the infusion (injection into the bloodstream) of factor concentrates given to prevent and control bleeding.

    Mild hemophilia can be treated with injections of a synthetic hormone called DDAVP or nasal spray that may increase the level of Factor VIII in the blood. In addition, our pediatric hematologist will recommend giving a child with hemophilia immunizations under the skin instead of in muscle to prevent deep muscle bleeds; avoid prescribing aspirin or ibuprofen, as well as products containing them; and provide frequent, follow-up care, including regular assessment of joints.

    Working with you and your child, our team develops an ongoing medical care plan that addresses your child’s physical, emotional, and educational needs. 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.

    Technology is changing the way we think about factor replacement therapy. A new group of factor products have started to emerge on the market for both hemophilia A and hemophilia B. The goal of these new products is to last longer in the blood than our current factor products, so that bleeding prevention may be achieved with less frequent infusions. The presentation in the links below provides more information about these new factor products. With so many options for factor replacement therapy now available, your medical team will work closely with you to be sure you are on the optimal factor product and dose regimen to minimize your bleeding risk and maximize your quality of life.

    Why Choose Us?

    • We are the largest federally-funded hemophilia treatment center (HTC) in New England. People with hemophilia who receive care through a designated HTC have significantly reduced risk of bleeding complications, better school and work attendance, and improved emotional health and well-being. By emphasizing early diagnosis and intervention, HTCs create a positive impact on health, lifestyle, and long-term well-being.
    • Our staff offers ongoing education, evaluation, and communication, all individualized to the needs of each family.
    • We are available 24 hours a day, 7 days a week.
    • Our nurse practitioner and social worker provide education about hemophilia to schools. Upon request, they will visit the school and work directly with teachers to safely integrate the student into the classroom and gym.
    • We provide patients with travel letters and wallet cards that contain diagnosis and treatment recommendations. These documents are updated annually to facilitate rapid and appropriate treatment outside our center.
    • We negotiate highly competitive rates with commercial insurers and provide discounts to MassHealth for clotting-factor replacement products.
    • We form close relationships with our patients and families. When young adults (generally ages 18 to 22) are ready to transition to the adult Boston Hemophilia Center, we offer a seamless transition to Brigham and Women's Hospital, located on the same campus as our pediatric clinic in the Longwood Medical Area.
    • We enable people with hemophilia and their families to manage the illness as independently as possible, and therefore, to lead more normal, healthy lives.

    Home Infusion Program

    Our Boston Hemophilia Center staff work closely with home infusion nurses who can provide care to your child in your home.

    • Treatment at home is more convenient and less disruptive.
    • With home infusion therapy, trips to the hospital are significantly reduced.
    • Early treatment reduces pain and discomfort and helps avoid long-term joint damage.
    • Early intervention reduces the amount of costly factor replacement.
    • At-home infusion education and personalized training allows patients and families to manage the illness as independently as possible.

    In addition to giving your child greater independence, home infusion also allows children with severe or moderate hemophilia to benefit from preventive infusion of factor without frequent trips to the hospital. The hematologist or nurse practitioner will evaluate each situation to determine the best approach for your child.

    For more information about the Home Infusion Program, please contact our nurse practitioner at 617-355-6101.

    Factor Program

    Factor replacement therapy is the basic treatment for people with bleeding or clotting disorders. This is the infusion (injection into the bloodstream) of factor concentrates given to prevent or control bleeding or excess clotting.

    We know factor products and supplies are costly. As a federally designated hemophilia treatment center, the Boston Hemophilia Center negotiates highly competitive rates with commercial insurers and provides discounts to MassHealth. Proceeds support such important initiatives as:

    • Clinical services
    • Data collection to improve care
    • Educational programs
    • Special projects like The Gift of Experience
    • Grants to non-profit organizations that support hemophilia patients and their families

    To enroll in the Factor Program or for other issues and questions, please contact:
    Clifford F. Haas, Factor Program Customer Service and Operations Manager
    Phone: 617-732-5409 | Fax: 617-732-5706
    Email: cfhaas@partners.org

    For pharmacy questions, contact Eaton Apothecary, our Factor Program Pharmacy:
    Phone: 781-575-0139 | Fax: 781-575-0160

    Genetic Testing and Counseling

    Stacy Croteau, MD, MMS, medical director of the Boston Hemophilia Center, can 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 genetic testing and counseling services, please call 617-355-6101.

    Preparing for School

    The Boston Hemophilia Center appreciates how important it is for each child to integrate successfully in school. Whether it's starting preschool, beginning kindergarten, or changing grades, parents want to be assured that their children are safe—and that school personnel understand bleeding disorders so that they can provide the appropriate support and know what to do in case of a bleed.

    Our hemophilia nurse, Maura Padula, RN, and social worker, Jackie Miranda, MSW, LICSW, can help. Contact them at 617-355-6101.

    Annual Patient and Family Programs

    The Boston Hemophilia Center offers patient- and family-focused programs each year. In past years, programs have included:

    • Half-day education programs
    • Celebrations of World Hemophilia Day, an international day of recognition of the many people with bleeding disorders throughout the world still in need of adequate treatment
    • Fun summer events focused on outdoor activity and physical fitness

    Visit our Facebook page to learn more about upcoming events or contact Peg Geary at 617-732-8537.

    Our Newsletter: Centerpoints

    Centerpoints is the Boston Hemophilia Center’s patient and family newsletter. The latest edition and some archived issues are available below.

    The Gift of Experience Oral History Project

    The Gift of Experience started as an oral history research project that was conducted from 2004 to 2007. Twenty-one men with hemophilia, all born before 1965, who were treated by the Boston Hemophilia Center, talked about what it was like for them to have the disease. Their histories reflect the remarkable lifestyle changes that have occurred due to the dramatic advances in the treatment of hemophilia, as well as the heartbreaking challenges that some sustained.

    The research project resulted in tapes and transcriptions, which were gifted to the Harvard Medical School’s Countway Library, as well as a book. The Gift of Experience, by Laura Gray and Christine Chamberlain, is a compilation of quotations extracted from the oral history interviews, along with quotations from caregivers who treated hemophilia during the 1970s and 1980s.

    The Gift of Experience II, by Laura Gray, Ziva Mann, and Allie Boutin, was written for families with newly diagnosed or young children with hemophilia. This book provides excerpts of conversations with 19 parents (15 mothers and four fathers) from the Boston Hemophilia Center, who share what it’s been like to raise their children from birth to age six. The children have mild, moderate, or severe hemophilia and come from a variety of backgrounds.

    Both books are available on Amazon through the links above and provide invaluable insight into the lives and care of people with hemophilia.

    Our Hemophilia Research

    Hemophilia is a lifelong disease, but significant advances in preventing bleeding episodes and better treatment means that those with hemophilia suffer fewer damaging consequences of the illness than ever before. Innovations in the production of synthetic factor products have also enhanced safety and reduced complications.

    Researchers at the Boston Hemophilia Center are helping to advance the understanding and treatment of hemophilia. We are conducting research to improve the lifestyle of our patients, including trials of new, longer-acting replacement factors aimed at reducing the frequency of required treatment. We are also investigating the possible use of gene therapy to treat hemophilia and other bleeding disorders. Our investigators participate in large, multi-center research studies, and also lead smaller independent initiatives to help improve treatment.

    See our open clinical trials for hemophilia and von Willebrand disease.

    American Thrombosis and Hemostasis Network (ATHN) Programs

    Working with the American Thrombosis and Hemostasis Network (ATHN), we offer several innovative tools and programs for our patients:

    • ATHN is working with the Boston Hemophilia Center and other hemophilia treatment centers nationwide to create a secure database of patient health data that can be used to support research and address important issues about treatment. Patients can choose to have their information included in this dataset (which follows all HIPAA privacy guidelines).
    • Through the ATHNready Program, the Boston Hemophilia Center can provide patients personal copies of their health information on a wallet-sized card with an attached flash-drive. This card can be used when patients are away from their regular HTC and need immediate access to their medical information in an emergency. Patients can have peace of mind knowing that their information is secure and available to them when they need it.
    • ATHNadvoy provides a quick and convenient method of tracking infusion of factor products. By signing up for this free program, patients can securely log all infusions and record bleeds online on the ATHNadvoy website or through the iOS mobile app (available for iPhones and iPads). The program allows patients to review their factor usage in several different formats and is shared with the Boston Hemophilia Center to allow for the best management of care.

    To request access to ATHNadvoy or to learn more about ATHN’s other programs, please visit athn.org.

    Clinician Resources and Referrals

    Refer a patient
    To refer a patient to the Boston Hemophilia Center, please provide:

    • written referral from the PCP
    • patient's most recent labs
    • patient's most recent hematology clinic note (if one exists)

    This information should be faxed to 617-730-0641 or mailed to:
    Boston Hemophilia Center
    Boston Children's Hospital
    300 Longwood Avenue, Fegan 7
    Boston, MA 02115

    International referrals
    Phone: +1 617-632-2952 | Email: pedi_international@dfci.harvard.edu
    We facilitate the medical review of patient records, schedule appointments, and provide assistance with customs and immigration, transportation, and hotel and housing accommodations. Learn more about our services to support international patients.

    Fellowship in Pediatric Hematology/Oncology
    Learn about the Pediatric Hematology/Oncology Fellowship Program at Dana-Farber/Boston Children's Cancer and Blood Disorders Center.

    Contact Us

    We’re available to answer your questions, offer guidance, or provide comfort.

    • Call 617-355-6101 to schedule an appointment, ask questions, or speak with a nurse. You may also request an appointment through our secure online form.
    • International: Call +1 617-582-7434 or email: pedi_international@dfci.harvard.edu.
    • To page your nurse practitioner during the week, call 617-355-6369 and ask for pager #1254.
    • To page a hematologist on a weekend, call 617-355-6369 and ask for the hematologist on-call.
    • For questions about insurance matters, contact our social worker, Kate Quint, MSW, LICSW, at 617-355-0794 or via email.

    Insurance and Financial Information

    We understand that dealing with insurance companies and other financial issues can cause you additional stress. When your child becomes a Boston Hemophilia Center patient, you’ll receive a brochure called "Paying for Your Child's Treatment." This will answer many of your questions and provide resources throughout your child’s treatment.

    Financial resource specialists at Boston Children's Hospital are available to help you with finances and insurance coverage so you can focus on your child, your most important concern at this time. For questions, contact our social worker, Jackie Miranda, MSW, LICSW, at 617-355-0794 or via email.

    Learn more by visiting the Boston Children's main insurance and financial information page.

    Useful Links

  • Contact the Boston Hemophilia Center

    To ask questions, speak with a nurse, or schedule an appointment, contact us at:
    Pediatric Center: 617-355-6101
    Adult Center: 617-732-5844

    We also offer international support services.
  • Clinical Trials

    Through clinical trials and research, our Blood Disorders Center is continuously advancing the treatment of blood disorders in children.callout bg
  • Treating Blood Disorders

    At Dana-Farber/Boston Children's, your child will have access to a wide range of treatment options for blood disorders, including blood transfusions, surgery, advanced new medications, and stem cell transplant.