Boston Hemophilia Center

Patient & Family Support

Annual Patient and Family Programs

The Boston Hemophilia Center offers three patient- and family-focused programs each year:

• In the fall, we have a half-day education program.
   
• in the spring, we celebrate World Hemophilia Day, an international day of recognition of the many people with bleeding disorders throughout the world still in need of adequate treatment.
   
• In the summer, we have a fun event that focuses on an outdoor activity or an activity for physical fitness.

Our Facebook page will always list upcoming events.

For more information, contact Laura Gray at 617-355-7165 or via email.

Home Infusion Program

Our Center provides access to expert home infusion nurses. Your home infusion nurses will often stay the same, even if you choose to change pharmacies.  

Learn more about our Home Infusion Program.

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 social worker, Kate Quint, MSW, LICSW, and nurse practitioner, Loren D'Angelo, CPNP, MSN, RN, can help. Contact them at 617-355-6101.

"The Gift of Experience" Oral History Project

"The Gift of Experience" is 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.

The transcriptions and tapes of the interviews were gifted to Harvard Medical School's Countway Library and may be accessed here.

The Gift of Experience Book

The book The Gift of Experience, by Laura Gray and Christine Chamberlain, is a compilation of quotations extracted from the interviews taken during the oral history project, along with quotations from caregivers who treated hemophilia during the 1970s and 1980s.

The book is a must-read for anyone interested in the illness. It is moving and inspiring and is a hopeful account of the human experience. Available at bookstores and via Amazon.com.

Clinical Trials

The Boston Hemophilia Center is dedicated to advancing understanding and treatment of hemophilia.

Our investigators and other researchers throughout Dana-Farber/Children's Hospital Cancer Center participate in large, multi-center research studies, as well as lead smaller independent initiatives to help improve treatment.

We currently offer several active clinical research studies for bleeding disorders, and others are in the process of development and approval. Current studies are available to children or adults with hemophilia A, hemophilia B, hemophilia with inhibitors, von Willebrand's disease, women with bleeding disorders, knee replacement surgery and factor XIII deficiency.

To learn more about the studies that are going on at our Center, please contact Stephanie Slate, Clinical Research Coordinator, at 617-355-6863.

• View our current clinical trials
• Read our introduction to research studies, “Understanding Clinical Trials”

Useful Links

• National Hemophilia Foundation
• The New England Hemophilia Association
• The World Federation of Hemophilia
• LA Kelley Communications
• The Hemophilia Federation of America
• The Hemophilia, von Willebrand Disease & Platelet Disorders Handbook
  This handbook is a fantastic online resource, offered free of charge by Hemophilia of Georgia.
• Medicalert.org
  A website to order medic alert bracelets or necklaces.
• Patient Services Incorporated
  Patient Services Incorporated (PSI) is a non-profit charitable organization that offers a "safety net" for people with hemophilia by subsidizing cost of insurance premiums and other services.
• The American Thrombosis and Hemostasis Network
  The American Thrombosis and Hemostasis Network is a non-profit organization founded to advance and improve the care of individuals affected by bleeding and thrombotic disorders.
• www.nichcy.org
  National Dissemination Center for Children with Disabilities
• http://www.allaboutbleeding.com 
• http://www.coramhemophilia.com/ 
  Excellent information about transition guidelines
• http://www.cdc.gov   / http://www.cdc.gov/spanish  
  U.S. Centers for Disease Control
• www.hemophiliahealth.com 
  Accredo's Karing for Kids has some wonderful animations for children.
• http://www.fda.gov/cber/recalls.htm
  FDA's Blood Products Hot Line
• http://www.patientnotificationsystem.org 
  National Notification Center / Patient Notification System