The 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:
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.
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.
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.
This 45-minute Factor Replacement Therapy presentation is divided into two sections:https://meeting.childrens.harvard.edu/p1ixy2s3bep/https://meeting.childrens.harvard.edu/p2gyzv9g2ev/
Our Boston Hemophilia Center staff work closely with home
infusion nurses who can provide care to your child in your home.
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 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:
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
For pharmacy questions, contact Eaton Apothecary, our Factor Program
Phone: 781-575-0139 | Fax: 781-575-0160
Stacy Croteau, MD, MMS, associate 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.
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.
The Boston Hemophilia Center offers patient- and family-focused programs each year. In past years, programs have included:
Visit our Facebook page to learn more about upcoming
events, or contact Peg Geary at 617-732-8537.
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" 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 6. The children have mild, moderate, or severe hemophilia and come from a variety of backgrounds.
Both books are available on
Amazon.com through the links above and provide invaluable insight into the
lives and care of people with hemophilia.
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.
For more information about our research, please contact research coordinator Emily Coe at 617-355-8733.
Working with the American Thrombosis and Hemostasis Network (ATHN), we offer several innovative tools and programs for our patients:
To request access to ATHNadvoy or to learn more about ATHN’s other programs, please visit athn.org or contact research coordinator Emily Coe at 617-355-8733.
Refer a patient
To refer a patient to the Boston Hemophilia Center, please provide:
This information should be faxed to 617-730-0641 or mailed to:Boston Hemophilia CenterBoston Children's Hospital300 Longwood Avenue, Fegan 7Boston, MA 02115
International referralsPhone: +1 617-632-2952 | Email: firstname.lastname@example.org
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.
We’re available to answer your questions, offer guidance or provide comfort.
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.