For Patients & Families | Overview
Learn about the support we provide and the resources available for patients and families coping with issues related to bleeding disorders.
Helpful resources for the bleeding disorders community
Boston Hemophilia Center newsletter
Centerpoints is Boston Hemophilia Center’s patient and family newsletter. Read the most recent issue.
Patient and family education sheets
'The Gift of Experience II'
"The Gift of Experience II," available on Amazon, was written for families with newly diagnosed or young children with hemophilia. This book provides excerpts of conversations with 19 parents from the Boston Hemophilia Center, who share what it’s been like to raise their children from birth to age 6.
Back to school with a bleeding disorder
When your child has a bleeding disorder, sending them to school adds another level of preparedness. The Boston Hemophilia Center is here to help you plan ahead and take proactive steps to ensure that the school experience is as normal and safe as possible. It's important to inform school personnel about your child's bleeding disorders so that they can provide appropriate support. We can help with that. For more information, contact our hemophilia nurse, Maura Padula, RN, or our social worker, Jacqueline Miranda, MSW, LICSW.
Patient and family focused programs
Each year, the Boston Hemophilia Center offers patient and family focused programs. In past years, programs have included:
- half-day education programs
- World Hemophilia Day celebrations
- summer events focused on outdoor activities and physical fitness
To learn more about upcoming events, visit our Facebook page.
Useful links
- National Bleeding Disorders Foundation
- New England Hemophilia Association
- World Federation of Hemophilia
- Hemophilia Federation of America
- Patient Services Incorporated
- Center for Disease Control and Prevention: English | Spanish