HFA Awarded PCORI Grant to Engage Women in Research

Hemophilia Federation of America has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute for its FIRST (Females in Research Sharing and Translation) Project to improve opportunities for women to be engaged in patient-centered research.The capacity-building grant will support HFA’s FIRST Project which will begin by identifying how women are currently […]

Bioverativ Strengthens Commitment To Women With Bleeding Disorders

Bioverativ joins the global hemophilia community in recognizing World Hemophilia Day and supporting the millions of women and girls impacted by bleeding disorders through this year’s theme, “Hear Their Voices.”Excerpted from the press release: “Bioverativ shares the World Federation of Hemophilia’s commitment to understanding the needs of all members of the bleeding disorders community, including women, […]

Listening To The Needs Of Women

“Throughout the CHOICE Project we heard from numerous women about their lack of access to the diagnosis and care they need as patients with bleeding disorders. Many women explained that doctors told them women can’t have hemophilia, or a bleeding disorder, and otherwise how providers were dismissive of their symptoms and pain.” – Wendy Owens, […]

Women Are Not Just Carriers

While some women experience bleeding symptoms monthly or even more frequently, other women may go years before bleeding issues are recognized, making a diagnosis even more difficult. Jennifer was a hemophilia carrier for 33 years before she had her first bleed. She shares the emotional and physical pain she endured as she struggled to get […]

CDC Research Study: Female Hemophilia Carriers Have Joint Abnormalities

Research has suggested that women who are carriers for hemophilia (see definition in box below) might have an increased tendency to bleed. Repeat bleeding into the joint can lead to persistent joint swelling, ultimately leading to limited joint movement, and reduced joint range of motion. Given that there is an under-appreciation of the effects of being a […]

CDC Webinar: Reproductive Issues in Women with Bleeding Disorders

On Thursday, January 22, 2015, the CDC hosted a webinar to help women with a bleeding disorder recognize the signs and symptoms of reproductive issues. The webinar was facilitated by Andra H. James, MD.Dr. James is Consulting Professor of Obstetrics and Gynecology at Duke University, where she also has an appointment in the Division of Hematology. Dr. James […]

Girls Have Hemophilia, Too!

My childhood was relatively normal. I grew up the oldest of three children, had two caring and attentive parents, and did well in school. As a family, we went on regular vacations. I faced many challenges growing up and did not know at the time that they were related to an undiagnosed bleeding disorder. There […]